appendix 1 - aacpdm

Patient-centered research agenda for CP Appendix 2

Appendix 1

Table of Contents Categorized List of Top 20 ..............................................................................................................1

Comparative Effectiveness of Interventions ...................................................................................... 1 Exercise, Physical Activity and Chronic Disease Risk .......................................................................... 2 Understanding Aging ........................................................................................................................... 2 Complementary and Alternative Medicine ........................................................................................ 4 Other Ideas .......................................................................................................................................... 4

Consolidations List .........................................................................................................................5 Ideas Considered Out-of-Scope ......................................................................................................6 Complete ranked list – Care and Treatment Ideas ...........................................................................7 Complete ranked list – Research ................................................................................................... 26 Underserved Ideas ....................................................................................................................... 43

Categorized List of Top 20

Comparative Effectiveness of Interventions

Research 2 Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities?

Research 5 What are the best methods and ways to reduce pain, falling, lack of stamina, and deterioration of function that can have a negative impact on the quality of life for people with CP especially in adulthood?

Research 13 Research the effectiveness of intensive physical therapy programs, bursts of services, combined protocols (i.e. botox with intensive PT, etc.) Evidence of efficacy is needed to get ALL insurers to fully cover the treatment options that work.

Care Treatment

13 Evaluating the intensity of physical therapy and other therapies that is needed for condition, age, GMFCS level, function, and other individual characteristics.


Care Treatment

18 Identify biomarkers (neuroimaging, blood, CSF, amniotic fluid) to help determine which individuals respond best to which interventions (therapy, medical, surgical) so that treatment approaches can be tailored to each individual person with CP

Exercise, Physical Activity and Chronic Disease Risk

Research 1 What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize

function in each GMFCS category across the lifespan?

Care Treatment

6 Research effective ways to build and maintain strength, flexibility & cardiovascular health in children and adults with CP. How can we find

better ways to successfully integrate these into daily living?

Research 7 Develop and test effective methods for exercise and increased physical activity for individuals who are less ambulatory (Some GMFCS III, and

GMFCS IV and V) including techniques, proper dosing, and information on effects on strength and health.

Care Treatment

8 Exercising to improve general health is a challenge for people with CP. Study interventions that promote effective exercise techniques and/or adapted equipment for home/gym to enable effective cardiovascular

and strength training for all ages/levels.

Understanding Aging

Care

Treatment 1 Research the issues around aging with CP, to understand not only how

to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments

such as pain, fatigue, and functional loss.

Research 11 What are effective treatment methods to address differential outcomes in adolescents and adults related to pain, fatigue, and early functional

loss?

Care Treatment

11 Have large-scale studies that follow children with the various types of cerebral palsy throughout adulthood to discover how the aging process

affects individuals with different types of CP & severity levels.


Research 19 How do we optimize and streamline transitional care services and support for teens with CP transitioning into and through adulthood?

Once a person reaches the age of 18, access to all of the above is often removed or limited.


Complementary and Alternative Medicine

Care Treatment

12 Study the outcomes of complementary and nontraditional therapies, i.e. hyperbaric oxygen, hippo, swimming/aquatic, Feldenkrais, massage,

yoga, Tai Chi, music, recreational, acupuncture, etc. Reviewing efficacy, costs, insurance support probabilities.

Research 20 Research neurosensorimotor reflex integration for dysfunctional reflexes in children and adults with CP to improve function, mobility and

flexibility and decrease pain, startle and obligatory movement.

Other Ideas

Research 4 Increasing age is related to pain and fatigue in people with CP, regardless of GMFCS level. What variables are important to monitor / treat early on in life to prevent the development of pain and fatigue later on in life?

Research 8 How can we best leverage the brain's neuroplasticity to retrain neural pathways for improved motor function, speech function and mobility?

Care Treatment

15 How do we best maximize functional independence and life participation of children and adults with CP? (Inclusion beyond the CP

community)

Research 18 Quality of life is an important goal for a number of questions related to CP. How do we quantify that so that we can really answer which

interventions produce the greatest benefit to quality of life?

Research 21 not much work has been done on the cognitive impairments including difficulties with math and any subject with spatial orientation


Consolidations List

Research Ideas Considered Substantially Similar

Codigital Question Consensus

Theme

R-2

Which interventions [surgeries, injections, medications and therapies (orthotics,

equipment, training)] are associated with better functional outcomes (important to child/

family) controlling for GMFCS level, age and co-morbidities?


C-4

How can multiple interventions (both treatments and other measures) be

employed to provide the greatest quality of life improvement for children and adults

with cerebral palsy?

Comparative Effectiveness of interventions

C-9

A collaborative, insurance-supported, approach with orthopedic surgeons,

developmental medicine, therapists, patients and families to evaluate pre- and post-

surgical changes in function, participation, caregiving, pain and quality of life.

Comparative Effectiveness of interventions

R-16

What combination of therapeutic interventions leads to the greatest measurable

improvements in quality of life? For example, Botox then intensive PT or botox then

once a week PT or NMES during therapy or serial casting or therapies without botox.


R-15

There are many interventions for gross motor functioning. What interventions work

and for whom? What are the long term outcomes? How is this different for different

types of CP?


R-6

What combination, dose and timing of surgical, pharmacological, and physical

interventions maximize musculoskeletal health and functionality in individuals with CP

and varying GMFCS level?


R-17

CP is a heterogeneous condition & is always marked by an impairment of muscles

or movement. What combination of treatments-medical, surgical & CAM provide best

outcomes for tone management at what age, in what order, how much and for which

patients?



C-12

Study the outcomes of complementary and nontraditional therapies, i.e. hyperbaric

oxygen, hippo, swimming/aquatic, Feldenkrais, massage, yoga, Tai Chi, music,

recreational, acupuncture, etc. Reviewing efficacy, costs, insurance support probabilities.


C-16

What Complementary and Alternative Medicine (CAM) techniques and methods

are effective (and for which conditions/symptoms) for both children and adults with

cerebral palsy?


Ideas Considered Out-of-Scope These ideas were identified by the authors as falling into either Advocacy and Education or Best Practices themes. Neither theme of ideas was within the scope of the project to set a patient-centered research agenda.

Codigital Source &

Rank Question Consensus Theme

C-2 Create a coalition of clinicians, researchers and patient advocates that will

speak regarding cerebral palsy at a national level and increase funding and

awareness and provide education to the public, as has occurred for people living

with autism

Advocacy and Education

C-7 Move from a disability model to a health model--de-emphasize the intensity

of treatment designed to improve movement patterns and emphasize interventions

designed to increase healthy behaviors, self-management, participation, and

independence.


R-9 How can we improve access to early diagnosis of CP, so that children with

CP have access to all the tools that will maximize the potential for neuro

rehabilitation during the critical first three years of life?


C-10 Increase outreach and training for health care providers of adults with CP,

particularly family medicine & internal medicine physicians. Physicians outside

of their specialty often have a poor understanding of proper care for our patients


R-12 How can we improve access to educated competent medical care for adults

with CP? This would include access to primary care doctors and specialists who

all have training in CP and the effects that it has on adults as they age.



C-14 Increase awareness by the medical community about the dynamic impact

that CP has on people as they enter into adulthood, such that CP treatment would

remain available beyond age 18 and would be covered by all types of insurance.


C-20 Conduct more reasearch which focuses on the viewpoints of people with CP,

so that more knowledge can be gained about living with a lifelong disability. Advocacy and Education

C-3 Develop best practice protocols on standards of care for Multidisciplinary

Teams (Physicians/PT/OT/SLP/Orthotists/ Parents/Caregiver) so that a uniform

approach in the assessment & treatment of children & adults with CP is provided

worldwide.

Best practices

C-5 Development of national clinical management guidelines(including family

input) for caring for people with CP, categorized by GMFCS level and age. Best practices

R-10 What are effective treatments for each type of CP or each level of GMFCS

from childhood to adulthood? Complementary and alternative (CAM) methods

should be considered. Create clinical management algorithms by movement

disorder and functional level.

Best Practices

R-14 What spasticity interventions (massage provided by a LMT, oral drugs,

botulinum toxin, baclofen pumps, selective dorsal rhizotomy), as well as, CAM

methods such as acupuncture reduce tone, prevent contractures, and/or improve

quality of life?

Best Practices

C-17 How can we provide support as a collaborative team (family, health

professionals, community, etc) to facilitate social integration for children & adults

with CP for increased social engagement and meaningful peer relationships.

Best practices

C-19 Develop guidelines/education for better nutrition and weight management to

maintain functional mobility & decrease secondary health problems (pain,

fatigue, decreased mobility & increased caregiver assistance) for weight

management in CP

Best practices

Complete ranked list – Care and Treatment Ideas

1. Research the issues around aging with CP, to understand not only how to treat adults now, but also to update our treatments & therapies with children who have CP to prevent some of the secondary impairments such as pain, fatigue, and functional loss.


2. Create a coalition of clinicians, researchers and patient advocates that will speak regarding cerebral palsy at a national level and increase funding and awareness and provide education to the public, as has occurred for people living with autism

3. Develop best practice protocols on standards of care for Multidisciplinary Teams (Physicians/PT/OT/SLP/Orthotists/ Parents/Caregiver) so that a uniform approach in the assessment & treatment of children & adults with CP is provided worldwide.

4. How can multiple interventions (both treatments and other measures) be employed to provide the greatest quality of life improvement for children and adults with cerebral palsy?

5. Development of national clinical management guidelines(including family input) for caring for people with CP, categorized by GMFCS level and age.

6. Research effective ways to build and maintain strength, flexibility & cardiovascular health in children and adults with CP. How can we find better ways to successfully integrate these into daily living?

7. Move from a disability model to a health model--de-emphasize the intensity of treatment designed to improve movement patterns and emphasize interventions designed to increase healthy behaviors, self-management, participation, and independence.

8. Exercising to improve general health is a challenge for people with CP. Study interventions that promote effective exercise techniques and/or adapted equipment for home/gym to enable effective cardiovascular and strength training for all ages/levels.

9. A collaborative, insurance-supported, approach with orthopedic surgeons, developmental medicine, therapists, patients and families to evaluate pre- and post-surgical changes in function, participation, caregiving, pain and quality of life.

10. Increase outreach and training for health care providers of adults with CP, particularly family medicine & internal medicine physicians. Physicians outside of their specialty often have a poor understanding of proper care for our patients

11. Have large-scale studies that follow children with the various types of cerebral palsy throughout adulthood to discover how the aging process affects individuals with different types of CP & severity levels.

12. Study the outcomes of complementary and nontraditional therapies, i.e. hyperbaric oxygen, hippo, swimming/aquatic, Feldenkrais, massage, yoga, Tai Chi, music, recreational, acupuncture, etc. Reviewing efficacy, costs, insurance support probabilities.


13. Evaluating the intensity of physical therapy and other therapies that is needed for condition, age, GMFCS level, function, and other individual characteristics.

14. Increase awareness by the medical community about the dynamic impact that CP has on people as they enter into adulthood, such that CP treatment would remain available beyond age 18 and would be covered by all types of insurance.

15. How do we best maximize functional independence and life participation of children and adults with CP? (Inclusion beyond the CP community)

16. What Complementary and Alternative Medicine (CAM) techniques and methods are effective (and for which conditions/symptoms) for both children and adults with cerebral palsy?

17. How can we provide support as a collaborative team (family, health professionals, community, etc) to facilitate social integration for children & adults with CP for increased social engagement and meaningful peer relationships.

18. Identify biomarkers (neuroimaging, blood, CSF, amniotic fluid) to help determine which individuals respond best to which interventions (therapy, medical, surgical) so that treatment approaches can be tailored to each individual person with CP

19. Develop guidelines/education for better nutrition and weight management to maintain functional mobility & decrease secondary health problems (pain, fatigue, decreased mobility & increased caregiver assistance) for weight management in CP

20. Conduct more reasearch which focuses on the viewpoints of people with CP, so that more knowledge can be gained about living with a lifelong disability.

21. What are the best surgical or non-surgical interventions to preserve ambulation and mitigate arthritis and pain in cerebral palsy patients across their lifespan with severe pes planus/mid-foot instability, and at what age should they be performed?

22. Help doctors without much knowledge of people with CP to realize the importance of fully listening to these patients' unique perspectives on living with CP, so that the patient may receive better holistic health treatment.

23. Once a child reaches young adulthood, they assistive walking technology has not advanced in many years. Walkers, braces, crutches and wheelchairs have not had any major design edits


24. Have physicians explain to people with CP about the possibility of overuse syndrome and describe ways to curtail the probability of developing overuse syndrome and/or limiting its effects on individuals with CP particularly as they age.

25. Information/research on common emotional/behavioral/sociological conditions affecting people with CP and how to best support our children's mental health and well-being as they develop and age.

26. Explore the effects CP can have on the psychological and emotional states of those with CP, and on their relationships with others. So much is focused on the physical, but not the emotional and relational effects.

27. Facilitate increased self-esteem and autonomy in children & adults, so that they can develop a sense of self, and engage with peers in the community at the same level as non-disabled peers in their every day activities (play, work, etc-).

28. Improved coordination among service providers so that effects of CP can be viewed from multiple perspectives. Specialists tend to focus on their area.

29. Physicians should ask about any pain an individual with CP may have, since some research articles such as "Pain in adults with CP: impact and solutions" have noted that adults with CP seem not to discuss pain management with their doctors.

30. How do we make community gyms more accessible to individuals with CP such that they have adaptations for equipment readily available or have adapted versions of several exercise machines available to individuals with CP and similar conditions?

31. What technologies can help those individuals with the greatest motor impairments (for example, brain computer interface, improved eye gaze) and how can we make them more obtainable and efficient to use?

32. In patients that are non-verbal, and deemed cognitively delayed, is there a way to gauge perception of pain and other environmental stimulus? Those that we deem to be reacting, could we improve their ability to communicate discomfort or desires?

33. Prepare people with CP for the possibility of rapid functional changes throughout their lifespan with the focus on aging into disability versus aging with disability.

34. Study and implement ways to move away from CP research silos, when possible, by collaborating with similar disability organizations to maximize and expedite critical research.


35. How can the functional independence and participation of children and adults with CP in ADL (activities of daily living) be maximized.

36. Comparing the effectiveness of weekly physical therapy vs intensives

37. Create assisted living facilities for young adults with CP that are unable to live in the community independently, so that they are with age-appropriate peers, and do not have to be in nursing homes with the elderly or live with their parents.

38. Develop neuroimaging techniques that capture adaptive (as opposed to maladaptive) neuroplasticity that can be directly correlated to specific therapies or interventions.

39. Create evidence summaries reviewing important topics (risks/benefits of surgeries, effectiveness of standard & non-standard interventions, outcome measures, etc.) and make them accessible to he public and update them regularly.

40. What can we do to reduce isolation and facilitate interaction with other adults with CP, scattered in cities and towns around the globe? Isolation is a huge factor that has both physical and psychological repercussions.

41. Better prepare younger and older individuals with cerebral palsy about the possibility of an onset of relatively rapid changes to their functional levels and provide suggestions for decreasing and/or slowing functional loss.

42. Develop training programmes in basic therapeutically correct skills used in everyday activities for parents and primary caregivers of individuals affected by cerebral palsy.

43. People with CP have an increased risk for developing overuse syndromes and nerve entrapments. Developing a guide filled with suggestions on how to reduce these events and how to limit the effects of these occurrences would be useful.

44. CP happens around the globe even where there is no healthcare system to get surgeries, interventions or even an early diagnosis for better quality of life, Research should be more on formatting uniformed guidelines and methods to benefit all.

45. Educate families to evaluate treatment options based on evidence and expertise, ignoring hype and unproven anecdotes.


46. Screening for cardiovascular disease and other inactivity-related diseases for individuals with cerebral palsy during clinical encounters, regardless of age and GMFCS level

47. Regarding disability most advanced to under developed regions , Seating and positioning is very important in CP care, however there are not enough options which are affordable to most of the world's CP people, reduces chance of a productive life

48. Have a published or online guide (similar to Consumer Reports) for reviewing and rating various products used by people with CP for their effectiveness, cost, durability, etc.

49. Research the impact on families who have a child with CP and test strategies to decrease individual, family and marital stress.

50. Lobby and insist that the federal government protects and extends community-based supports and access to in-home supports for people with CP and others with disabilities.

51. Multidisciplinary intervention approaches for youth who experience a plateau and subsequent regression in ambulation and motor skills; how can we better manage this decline in function that occurs in childhood?

52. Physicians should discuss with parents/guardians of both young children and adolescents how aging with CP may affect their child in the future - potential premature aging, Post-Impairment Syndrome, etc. and possible interventions for these things.

53. Study of contemporary alternative therapies such as: cranial sacral therapy, Feldenkrais, ABM, somatic based therapies, massage, etc-and how they complement or exceed Standard OT, PT, ST.

54. There is a lot of support for caregivers of elderly people. Study interventions to help support the caregivers of children and young adults in order for all stakeholders to have quality of life and support their children/youth to the fullest.

55. Have at least one physician in each state that specializes in the treatment of adults with CP.

56. Assist in the development of a personalized nutritional regimen that best helps people with CP to maintain their strength, function, overall health.


57. Getting insurance companies to approve equipment based on each child's specific needs, and not what is authorized by insurance. Also making it easier to obtain prescriptions prior to authorizations.

58. Determine which surgical approach (vs no surgery) is most appropriate, at what time, for what type of individual for cerebral palsy

59. Most children with cerebral palsy do not easily move into or stay in positions for activities such as eating, dressing or washing. Develop community based support structures to support parents and caregivers within their local communities.

60. Frequent aspirations make feeding and nutrition difficult for CP people,There should be a study which can educate caregivers about G-Tube feeding and its benefits, as first tool to prevent pneumonia and manage calorie intake for the quality of life.

61. How effective is neuromuscular electrical stimulation in the treatment of dysphagia for children and adults with CP by GMFCS and age?

62. Determine if individuals with CP of different origin (lack of oxygen, prematurity, infection, etc) respond differently to treatments

63. Further development of the pool of specialised therapeutic skills relevant to the treatment of individuals affected by cerebral palsy.

64. Develop community based support structures to support parents and caregivers within their local communities.

65. Research the benefits to palliative care for individuals with CP, to manage pain and suffering.

66. Medicare coverage provided for orthopedic shoes and orthotics for ambulatory individuals with CP.

67. I believe it is important to understand what matters most to persons with cerebral palsy (based on age and functional levels) throughout their life spans, as that should help to guide interventions. Are we focusing on what patients really care about?


68. Provide adequate provision of needed funding and timely receipt of services to keep people with disabilities in the community so that they don't get needlessly institutionalized."

69. How can we better support the emotional needs of siblings of children with disabilities, as they often feel left out or resentment when there is more focus on their brother or sister that has the disability

70. Provide peer-to-peer counseling for indiduals with CP at the various levels of functioning and all the stages of living - childhood, adolescence, early adulthood, middle adulthood, and late adulthood, if desired.

71. Holistic, patient-centered, interdisciplinary care for people with CP. Care that is not "siloed" but rather multi- and inter-disciplinary.

72. Determine with herbal supplements are best to use in conjunction with pharmaceutical medication for people with CP on an individual, case-by-case basis.

73. Care Coordination with multiple providers

74. To develop good skills for daily living and self care for people with cerebral palsy.

75. Research issues related to augmentative and assistive technology for children and adults with CP who are nonverbal. Develop quality criteria for deciding which devices work best for which subcategories of CP.

76. There should be basic format to set up CP registries (like 5, or 10 basic questions ) in less privileged and underdeveloped regions of the world where early intervention and diagnosis is not available.

77. Testing how effective weekly therapy is for non verbal kids

78. How can we make the life expectancy of cerebral palsy more than 40 years?


79. Despite the changes in Pertussis vaccine in last 30 years research should be done about all vaccines and CP occurrence, especially mandatory worldwide setup of vaccine, types and manufacturers of vaccines, quality control should be monitored.

80. Do siblings of children with disabilities display increased empathy to ALL other children and adults in comparison to siblings of children with no disabilities, And if so, how can we facilitate this in all children

81. Diagnosing CP earlier instead of waiting the traditional 2-3 years (or longer) to diagnose, so that early intervention therapies and other options can begin.

82. Organise statistical research with parents of children with CP in order to rank all therapies with the level of outcomes from parent's point of view

83. Creation of and access to multi-disciplinary and inter-disciplinary care of patients with CP. This is often hindered by institutional barriers and insurance.

84. Collaborate with pharmaceutical companies to develop a standardized extract of CBD oil for treatment of pain and spasticity in CP, and test the effectiveness of CBD in reducing pain and spasticity in CP

85. Provide living situation solutions for adults with CP who are unable to live alone to maximize their potential, but don't want to live with their parents or in a nursing home for the elderly. Research solutions for age appropriate peer living.

86. Forming a collaborative teams including professional multidisciplinary teams (pediatric, surgeon, OT, PT, etc), community, schools, parents, government and adult CP.

87. Raising awareness of CP in the society. This could probably lead to better funding of e.g research,therapy camps,paralympics...(Building up campaigns around Speechless would maybe be a good starting point )

88. What are the long-term psychological effects of medical procedures performed on children and adults with CP, and how can we decrease medical induced trauma?

89. Better access to speech-language services including AAC. There should be an intensive AAC camp where after a few weeks they are able to try things and experiment with the latest technology. These kids all need a voice


90. Asseseement and support/treatment for both ocular AND visual processing disorders like cortical visual impairment which affects a large number of individuals who have had brain injuries.

91. Improve the treatment of dystonia secondary to cerebral palsy. What intervention or combination of interventions work best?

92. Can neuro-imaging predict co-morbidities in children with CP?

93. Improve access to gym equipment for individuals with CP to encourage exercising, eg, gym availability of equipment with features such as adaptations with positioning accessories, accessibility in terms of locationand surrounding (not in crowded area)

94. Improve access to early diagnosis so that we can maximize the possibility of neuro rehabilitation. We need more multidisciplinary care centers / CP clinics, and babies with CP warning signs should be evaluated there.

95. Increase options of assistive ambulatory devices for adults with CP. Currently there is a scarcity of such options and more are needed to ensure that the variety of needs of adults with CP are addressed.

96. Institutionalizing respective governments training of public servants in CP mainstreaming. Awareness of CP condition in government work places is very limited or lacking.

97. Evaluate the functional outcomes and quality of life improvements of surgical interventions in children with high tone, but without typical indications for surgery (e.g., contractures, hip subluxation).

98. Better solutions for digestive problems like constipation.

99. The application of intelligent devices to equipment, supportive devices, afos etc so that they respond to the individual's movement and posture. We are applying mostly static support to individuals with lots of variation in movement.

100. I am interested in how the use of a power wheelchair affects family quality of life, child quality of life, and development in children with GMFCS IV-5.


101. How do the adverse events associated with tracheostomy and mechanical ventilation alter the life of the family?

102. Have physicians located throughout the United States who can address the concerns and function of adults with cerebral palsy.

103. Research into the efficacy of 24 hour postural management to preserve and improve range of motion and body symmetry, thus supporting better functional outcomes.

104. Developing a process or prototyping framework to more rapidly test and integrate new therapies and treatments into the medical community and the insurance industry to help ensure better outcomes and more affordability.

105. A directory for patients and caregivers showing resources available. It wasn't until last year that I found out about doctors that specialize in Physical Medicine & Rehabilitation. I'm 56 and none of my general practitioners mentioned PM&R.

106. We should have a main center for everything CP. where you can learn everything about CP, find any and all benefits available, a support system where fellow CP members can share successes and failures with the hope of helping each other.

107. Focus on approaches that can be used in less resourced places, where access to high tech solutions, advanced surgeries and so on is limited.

108. Increase availability of assistive ambulatory devices for adults with CP. Most adult devices are designed for seniors rather than adults with CP condition.

109. Research on and training in 24 hour postural management as a low tech/inexpensive approach to reduce contractures and skeletal deformities, and improve sleep, posture and function.

110. Functional levels seem to experience major changes every 20 years, 1-20, 20-40, 40-60,60-80. What is being done to prevent, prepare and transition those with CP in attempt to avoid declining function across the lifespan?

111. What is the impact of power mobility on motor development and psycho-social development of young children with CP (GMFCS levels IV and V)?


112. Create and test outcome measures that address the needs of adults and children with more severe cerebral palsy (GMFCS IV and V).

113. How can we increase the coordination and communication between clinical teams taking care of folks with CP?

114. Extending #11 - How do we capture the perspectives of those with CP and their families in identifying participation and quality of life outcomes?

115. Perhaps a digital encyclopedia or similar dynamic resource where one could go to research all kinds of problems: EG topics that have come up on my 41 yr old's life: hip and spine surgeries, Feldenkrais, botox, edema, water therapy.

116. Develop clinical management algorithms by GMFCS, MACS and CFCS that are evidence based.

117. Study of how the somato-sensory system is organized prior to the execution of a motor task, and how therapists (OT, PT, ST,) can better prepare the somato-sensory system for increased functional motor skills in children and adults with CP

118. What is the difference between gross motor function and manual ability in people with CP and what are the differences between CP subtypes?

119. Better ways to control vomiting and improve swallow so as not to lead to mucous always in the chest causing constant gagging.

120. I'd like more research on how we can help the brain relearn how to use itself to better help CP. Also inform older CP on available help for them. So much is geared towards young but people forget once the young lose their cuteness.

121. How to better train health care professionals in touch skills such as: palpation, Handling, sensation, to facilitate connected therapeutic relationships for diagnostic and therapeutic Interventions to prevent unintentional medical trauma in CP

122. How do primitive reflexes assist or restrict Motor development, and how do we facilitate integration within a dynamic systems approach for optimal Neuromotor development/ Neuroplasticity for increased function in children and adults with CP.


123. Does the use of too much adaptive equipment impede learning of Postural control and functional abilities in CP.

124. Do you orthotics really improve gait function during ambulation, or do they improve soft tissue integrity and provide joint stability in the stance phase of gait in children and adults with CP.

125. Nutrition; brain function greatly increases with good diets, strong in micro-nutrients; educating dieticians in nutrition, to work well with families, instead of encouraging just macro-nutrients would be a great start

126. Mild CP adults are resigned or forced to treat themselves. Turned down by my PT of 19 yrs as she is "pediatric". I lived with debilitating pain for years that was simply treated with rest, good PT and the right yoga video. Mental health focus.

127. Foundations must properly help CP adults if they say they're helping them. Foundations use young adults (Speechless) and adults (Zach Anner) to promote the 3-6 y.o. CP community, where most of the focus goes anyway. Wonder why we don't get funding.

128. The CPRN will create a data set that helps define research questions, but it will also better define characteristics of CP with that I hope we begin to think of outcomes in terms of creating better health, not just in terms of changing 'care'.

129. Study how to train professionals to provide mental health interventions at an early age to give children and youth the tools/strategies to deal with issues like anxiety, depression, OCD, sleep disorders etc. which are common for people with CP .

130. More awareness to families and professionals that The primary affects of CP are in posture & movement. Not spasticity- It is a secondary symptom of the primary problem &what interventions can facilitate better posture & movement 4 Neuroplasticity

131. How can research identify what factors contribute to Post-Impairment Syndrome and how to reduce and/or minimize those factors, so that aging with CP results in less loss of function and a reduction of pain throughout the aging process?

132. Comparison of functional outcomes of children/adults in other countries/cultures that do not have orthopedic interventions VS. the USA: How different or similar is function (GM mobility, ROM, JT Contractures, Ect-) without orthopedic intervention?

133. Improved AAC that would make it easier for nonverbal (or those with not easily understood speech) people with CP to communicate, even if they are severely limited in their movements.


134. Better cooperation with insurance companies in paying for evaluation tools, therapies, equipment, & medical services. Waiver programs have long wait lists and many are too rich for Medicaid but too poor to cover items denied by private insurance.

135. How can we increase the independence of individuals with CP in using gym equipment, performing stretches, and implementing other similar interventions.

136. Develop more comprehensive education for all parents of children with CP so that they can be active team members.

137. Does clinician bias influence treatment decisions for individuals with CP (ie the belief that an the individual will never walk ,they don't need a specific intervention vs someone with a less involved diagnosis who has a better chance of mobility)

138. What sensory techniques work best in the NICU to facilitate an optimal neurodevelopmental environment for pre-term infants, and how to best train healthcare professionals and families in these techniques.

139. Access to smart technology & the use of robotics to facilitate both participation and improvements in body structure and function at the same time eg. "walking" wheelchairs, power assisted orthotics, standing frames with continuous passive movements

140. Can CBD oil help decrease pain and spasticity in children and adults with CP

141. Improve early intervention services and interventions to maximize neuroplasticity.

142. Improving early identification, appropriate follow up and access to early intervention to help improve treatment and quality of life.

143. Better understand effects of interventions (like Botox) to improve functioning throughout childhood and prevent the need for surgical intervention

144. Long term studies on interventions with scoliosis and CP .


145. How can the use of exoskeleton technology (like the one used for SCI) assist in the neuro-rehabilitation for increased functional outcomes in ambulation for persons with CP

146. After the early insult, is there any type of neurostimulation (direct or through sensory input) that could stimulate regeneration or initiation of pathways to improved function.

147. There should be a lifelong study of people who have different types of CP from diagnosis to death. Each type/group should have a dedicated group of doctors and therapists following them throughout so as to get holistic view

148. More research on assistive devices: walkers, motorized assisted walkers, adult devices, braces that are bit more humane yet functional, new technologies with crutches,

149. Serial casting is a commonly used treatment for people with CP, but it can be done many different ways. There is a need to develop clear guidelines which determine when to cast and how to cast.

150. Create algorithms for care pathways for CP based on age, functional level and child/family characteristics that can be used to improve care.

151. Help adults find better care and treatments available to them

152. Comparative study of intensive therapies such as: Suit therapy, NDT, and ABM methods.

153. A study of cannabis oil (CBD) and it's affects in reducing spasticity for persons with CP

154. Increase accessibility of gym equipment for individuals with CP (i.e., make it easier for individuals to be positioned properly) so that they can get the most of the interventions with the use of gym equipment.

155. Improve access to health and fitness options for individuals with CP across the lifespan.


156. How somatic-based therapies can facilitate healing of the pre-and post birth trauma that causes CP in children and adults for increased neuromotor and social emotional abilities.

157. What are the most effective methods of improving the quality and quantity of ambulation in people with CP?

158. Spasticity and movement disorders - best interventions to treat them and prevent adverse effects.

159. Develop programs/interventions to assist youth and young adults to find volunteer and/or work opportunities in order to break down the stigma around people with disabilities to promote better outcomes and success for their future.

160. Improve availability of respite care for parents. A rested, refreshed parent is a better parent.

161. As a parent of a 4 year old with CP it would be so helpful if medical staff would explain all options with meds and therapy that are available. I have never been given handouts with info about CP and need to know conditions to watch for with my child

162. Have patients with CP participate in creation of new types of walkers, braces, crutches, etc

163. Increase access for individuals to be able to customize their equipment to optimize the benefit for their condition.

164. Outcome research around regenerative medicine (stem cells - different types) as well as EPO and other treatments that will focus on healing the injury and continued inflammation in the brain of older children, teens, and adults.

165. What is the best treatment for osteoporosis in children and adults with CP? Who should be treated with bisphosphonates? Which one? For how long?

166. Can gait analysis predict health and function for people with CP, and what parameters of gait are the most significant predictors?


167. Focus on prevention measures rather than trying to treat issues after they occur (e.g. contractures).

168. Increased awareness amongst clinicians of the visual impairments associated with CP, which can encompass both functional vision and visual function. Improved research efforts in this area as well.

169. Comparison of long-term functional outcomes of tendon and muscle lengthening's versus Selective Percutaneous Myofascial Lengthening's (SPML) for children and adults with CP.

170. Study how conventional and alternative therapy interventions can complement one another and at what intensity (for example 2 hours/day for 5 days/week) and for how long (example 2 years or ongoing) to achieve a positive result.

171. First of all I could sensitive women on how mothers can avoid having babies with cp. The other thing is that I could train caregivers on the way how they could be doing some exercises with people with cp.

172. Determine patient characteristics and specific indications for each surgical procedure that lead to best outcomes. Those procedures with similar indications could then be compared in a randomized clinical trial.

173. Since respiratory issues are a cause of death in people with cerebral palsy, it is necessary to create more interventions to prevent and to better manage them.

174. Organizing activity groups for both children and adults with CP & without CP in both recreational and therapeutic environments for increased inclusion with peer groups

175. Develop assistive technologies to coordinate fine and gross motor movement using machine memory and analytics (robotics) to adapt to the unique needs of the user.

176. New interventions under research (FES, robotic knee) should not be restricted to individuals who meet the eligibility criteria for that study. If an individual want to try out some clinical intervention, then they should be allowed to do so.

177. How does technology (tracheostomy and feeding tubes) alter participation, especially in the school? How can we increase inclusion of folks with CP with tracheostomy/mechanical ventilation or feeding tubes?


178. How do foot orthotics facilitate soft tissue mobility, function and joint stability for ambulatory adults with CP.

179. How can parents, caregivers and people who have CP can learn to facilitate neuroplasticity? Use novelty, slow down our movments, give times to the child to learn, change habits for adults with CP, etc.

180. Improved trunk control so that my child doesn't fall from side to side when she is in her wheelchair.

181. Can therapist driven surveillance programs, postural management, early referral and intervention eradicate hip subluxation, and decrease scoliosis, pain, contractures, number of surgeries and x-rays and deformity by 60-70%? - just like CPUP?

182. Double blind comparative study of the effectiveness of pain medications (NSAIDS etc-), Versus CBD oil in decreasing pain for people with CP

183. Increase access to personal trainers who are knowledgeable about CP so that individuals with CP can get the most out of interventions involving exercise equipment and stretching.

184. How do we determine effective therapy and numbers of hours of therapy per week to inform public health systems (Canada) and/or health insurances.

185. A solution to stopping the arms from drawing up like wings and improving flexibility.

186. Have a database of ALL brands, types and vendors of adaptive equipment that are useful for individuals with CP, including customization of different durable medical equipment available.

187. Identify supports needed to maximize independent living and an active lifestyle for adults with CP at each GMFCS level. Where supports are insufficient, identify practical ways to improve them.

188. I would like to see # 1 and # 2 integrated as I see them as part of each other


189. How to identify and treat sensory integration issues that often get missed due to the underlying neuromotor issues in children and adults with CP.

190. We must improve access to multi-specialty care centers / CP clinics for both children and adults. Communication between providers is key to excellent patient care.

191. Develop more research on stem cells that problem :brain not results of damage! Than you find cure for cp. With all physiothérapies of the world you can't repair dead cells of the brain...

192. Research ways aging affects CP, as to better equip adults with prevention & mitigation strategies.

193. Do more research on sensory perception and how it can be integrated into treatment to improve patient-centered outcomes in communication and mobility

194. Efficacy of nontraditional therapies such as hippotherapy, massage, swimming, intensive PT programs, etc. If efficacy can be proven, then insurances may begin covering nontraditional therapies.

195. Double-blind comparative study of effectiveness of oral anti- spasticity drugs (Baclofen, Valium), versus CBD oil in decreasing spasticity in children and adults with CP

196. my worry is when my child gets to be an old age(past 18) who will cover him for insurance. He is Disabled so Will SSI and Medicaid be able to sufficiently cover him the rest of his life and what about those out there on their own/ parents insurance

197. Coverage by private insurance for all medications, interventions, surgeries, adaptive equipment, technology for speech and other ADLs, therapies, etc to treat CP. Private insurance to cover waiver-like services to decrease our dependence on Medicaid.

198. A big population of children with CP lives in low & middle-income countries, but there is limited research on CP in these countries. I would like to see a more integration of researchers from all countries to engage in collaborative research

199. I have found effective therapy with a Plates-based program yet was not covered by insurance. I have not found traditional therapies, including surgery, to be effective. So how are people supposed to pay for therapies discovered by this research?


200. Comparison of massage versus myofascial release techniques for increased soft tissue mobility and increased functional abilities in Activities of Daily Living (ADLs) of children and adults with CP

201. Research on what interventions work with mixed tone CP, dystonia, athetoid, and ataxic . There is much information with spastic CP and research studies often specify needing to have spastic CP to qualify.

202. What AFO's (ankle/foot orthotics), for non-ambulatory and ambulatory use, provide the best long-term use outcome and is there a remarkable difference between brand and material used?

203. Why indifferent countries we have different treatments for CP? Why in Italy we have shock waves (less invasive than Botox) and payed by their insurance system? Why studies did in Italy not recognized abroad yet?

204. Provide Adults with CP information on Post Impairment Syndrome & help them determine what meds, treatments & exercises will work to alleviate their symptoms. Include alternative therapies: HBOT, stem cells, etc.

205. Partner with pharmaceutical companies and research organizations to develop orally effective drugs for management of spasticity.

Complete ranked list – Research

1. What are the best long term exercise/strength training strategies to improve activity, participation and health, minimize pain, and maximize function in each GMFCS category across the lifespan?

2. Which interventions [surgeries, injections, medications and therapies (orthotics, equipment, training)] are associated with better functional outcomes (important to child/ family) controlling for GMFCS level, age and co-morbidities?

3. So much intervention work is focused on early childhood, but what are the most effective interventions for older children and adults to maintain or increase independence and functional mobility and decrease/prevent pain?

4. Increasing age is related to pain and fatigue in people with CP, regardless of GMFCS level. What variables are important to monitor / treat early on in life to prevent the development of pain and fatigue later on in life?

5. What are the best methods and ways to reduce pain, falling, lack of stamina, and deterioration of function that can have a negative impact on the quality of life for people with CP especially in adulthood?


6. What combination, dose and timing of surgical, pharmacological, and physical interventions maximize musculoskeletal health and functionality in individuals with CP and varying GMFCS level?

7. Develop and test effective methods for exercise and increased physical activity for individuals who are less ambulatory (Some GMFCS III, and GMFCS IV and V) including techniques, proper dosing, and information on effects on strength and health.

8. How can we best leverage the brain's neuroplasticity to retrain neural pathways for improved motor function, speech function and mobility?

9. How can we improve access to early diagnosis of CP, so that children with CP have access to all the tools that will maximize the potential for neuro rehabilitation during the critical first three years of life?

10. What are effective treatments for each type of CP or each level of GMFCS from childhood to adulthood? Complementary and alternative (CAM) methods should be considered. Create clinical management algorithms by movement disorder and functional level.

11. What are effective treatment methods to address differential outcomes in adolescents and adults related to pain, fatigue, and early functional loss?

12. How can we improve access to educated competent medical care for adults with CP? This would include access to primary care doctors and specialists who all have training in CP and the effects that it has on adults as they age.

13. Research the effectiveness of intensive physical therapy programs, bursts of services, combined protocols (i.e. botox with intensive PT, etc.) Evidence of efficacy is needed to get ALL insurers to fully cover the treatment options that work.

14. What spasticity interventions (massage provided by a LMT, oral drugs, botulinum toxin, baclofen pumps, selective dorsal rhizotomy), as well as, CAM methods such as acupuncture reduce tone, prevent contractures, and/or improve quality of life?

15. There are many interventions for gross motor functioning. What interventions work and for whom? What are the long term outcomes? How is this different for different types of CP?

16. What combination of therapeutic interventions leads to the greatest measurable improvements in quality of life? For example, Botox then intensive PT or botox then once a week PT or NMES during therapy or serial casting or therapies without botox.


17. CP is a heterogeneous condition & is always marked by an impairment of muscles or movement. What combination of treatments-medical, surgical & CAM provide best outcomes for tone management at what age, in what order, how much and for which patients?

18. Quality of life is an important goal for a number of questions related to CP. How do we quantify that so that we can really answer which interventions produce the greatest benefit to quality of life?

19. How do we optimize and streamline transitional care services and support for teens with CP transitioning into and through adulthood? Once a person reaches the age of 18, access to all of the above is often removed or limited.

20. Research neurosensorimotor reflex integration for dysfunctional reflexes in children and adults with CP to improve function, mobility and flexibility and decrease pain, startle and obligatory movement.

21. not much work has been done on the cognitive impairments including difficulties with math and any subject with spatial orientation

22. What is the optimal combination and dosage of positioning devices in a postural management program for decreasing the incidence of contractures, deformities, hip subluxations, scoliosis, pain and the number of surgeries needed in GMFCS III-V.

23. What factors contribute to Post-Impairment Syndrome (CP's version of post polio syndrome) and what can reduce and/or minimize those factors, so that aging with CP results in less loss of function and less pain throughout the aging process?

24. What are the best ways to lessen the effects of premature aging for adults with CP beginning between the ages of 20 to 40 years old and continuing throughout all stages of adulthood?

25. What biomarkers can be used to detemine or predict the efficacy of interventions for improving functional outcomes at various stages of development in individuals with CP (e.g. will some strategies work better for some rather than others and why)?

26. What patient characteristics/ indications are associated with best and worst outcomes for each surgical treatment in CP (SDR, ITB pump, muscle tendon surgery, Selective Percutaneous Myofascial Lengthening, osteotomy, multi-level orthopedic surgery)

27. We need to move beyond surgery and positioning as the primary alternatives for GMFCS 4-5. What outcome measures are most sensitive and reliable for GMFCS 4-5? Without adequate outcome measures we are unable to develop and test new interventions.


28. In patients who are non-verbal, and deemed cognitively delayed, is there a way to gauge perception of pain and other environmental stimulus? Those who are deemed to be reacting, could we improve their ability to communicate discomfort or desires?

29. Create gold standards of care for each movement disorder associated with CP based on age and GMFCS level.

30. Study the effectiveness of Functional Electrical Stimmulation (FES) in strengthening and reciprocal inhibition of spastic muscles for persons with CP

31. What are the long-term effects from medications used in the treatment of cerebral palsy for such things as muscle spasticity?

32. What new medications or therapeutic techniques can be developed to treat symptoms and improve quality of life in individuals with CP?

33. Can abnormal muscle tone be reliably measured with a clinical tool?

34. Many therapies and services end too early as our kids “age out” of services. They continue to grow and learn long past these ages. How can we address learning and development throughout the lifespan.

35. Establish gold standards for appropriate use of deep brain stimulation in cerebral palsy

36. Can neurophysiologic measures be used to distinguish spasticity from dystonia in order to tailor interventions for patients with CP?

37. Comparative study of different surgical treatments for scoliosis(Spinal fusions, titanium rib, rods,) what are the long-term functional outcomes for children with CP Does it really preserve respiratory function or create more pain & limited mobility

38. What is the progression of possible physical changes through the different stages of adulthood for individuals with the various types of cerebral palsy? How can we optimize health and function?


39. For GMFCS III and some IV, what factors can best help determine that power mobility will be superior to walking to promote independence, self-efficacy, and success in social & educational settings without adversely affecting ambulation of GMFCS III?

40. Study of how the Vagus nerve influences sensory issues in persons with CP such as: fear of movement, tactile sensitivity, anxiety, inability to control emotional states, etc- to develop treatments for use by OT, PT, ST, & families in activities

41. What complementary and alternative medicine (CAM) such as acupuncture and herbal supplements can effectively be used to reduce the increase in medical and functional problems experienced by people with CP due to longer life expectancies?

42. Study the effectiveness of Vagal Nerve Stimulation (VNS) in the management of seizures VS. oral seizure medications & cost-effectiveness. Is there a significant difference in seizure management with VNS versus oral seizure medications?

43. How efficient is Hyperbaric oxygen therapy for children and adults with CP?

44. Can we extend Iona Novak's levels of evidence (green, yellow, red) for interventions to include CP subtype and optimal timing in order to create gold standards of care?

45. Can the need for anti-spasticity treatment be decreased by improving a patient's strength?

46. Can positional stretching be used to improve range of motion for patients with spasticity?

47. Can the addition of therapeutic, comfortable postural support at night reduce or delay the need for more invasive treatment options for joint contractures and dislocations, scoliosis and postural problems in children, youth and adults with CP?

48. Is it possible to improve sleep quality and reduce pain in people with CP through use of therapeutic positioning in a 24 hour postural management approach?

49. Generate evidence-based practice guidelines for the use of augmentative communication tools in CP


50. What are the best treatments to be utilized in the prevention of falls for people with cerebral palsy?

51. What is the difference between ethanol and phenol alcohol blocks for the management of spasticity, both short and long term, and which one demonstrates the best and most efficient functional outcomes for children and adults with CP

52. What will be the impact of autonomous driving for individuals with cerebral palsy, especially GMFCS III-V? What barriers may exist and what adjustments may be needed (access to vehicle, communication with vehicle)?

53. How can more knowledge be gained about the different aspects of living with a life long disability, so that conditions may be improved for all people ageing with CP - children, adolescents, and adults?

54. Does massage decrease muscle spasticity?

55. Comparative study of solid AFO's versus hinged AFO's and how they functionally help or hinder gait in persons with CP

56. Do spring-loaded splints such as Dynasplint or ultra-flex provide a better stretch than static splints?, or do they provide resistance for spastic muscles to work against? Comparison of effectiveness of spring loaded versus static splints

57. Education on where we are in the process of stem cells even though that is not the focus of this project, so we know the current status & what the advantages of waiting for clinical trials in the USA is compared to going to other countries now

58. Now that neuroplasticity is well accepted in the scientist community, all persons involved with CP need to understand what is this complex phenomena. What are the key factors to facilitate neuroplasticity?

59. How effective is neuromuscular electrical stimulation in the treatment of dysphagia (swallowing issues) by GMFCS level by age?

60. What is the relationship between gross motor function and manual ability in people with CP, and what are the differences between CP subtypes?


61. What roles besides nutritional assessments, should a nutritionist play in a multidisciplinary team of experts in the treatment and management of children with CP since these children have varied special nutritional needs.

62. Would you find a webinar session on employment beneficial?

63. Comparison of surgical treatments for hip dysplasia/dislocation (VOR, SLOB, calf donor, etc-) to determine efficiency of surgical procedure and examine best and worst functional outcomes for children with CP

64. Can neuro-imaging predict co-morbidities in children with CP?

65. Why are hinged AFO's used on non-ambulatory children and adults with CP when they have a little or No active foot movement?

66. What are the best policies and programs to raise awarness of the general population about CP (especially in schools and businesses) in order to create more inclusiveness & accessibility?

67. Is scoliosis one of the possible side effects of having intrathecal baclofen pump (IBP) and if so, does this cause problems in delivery of the medication when the pump needs to be replaced?

68. How does childhood trauma affect the lives of people with cerebral palsy verses people without cerebral palsy?

69. what measures can we put in place so that we work as a collaborative team to cure cerebral palsy?

70. Is there a long-term difference in outcomes for children who have rhizotomies at different sites?

71. Why do you persons with CP use postural muscles to move instead of large muscle groups for mobility? How can we develop interventions to improve efficiency of movement?


72. Study the long-term side effects of selective dorsal rizotomy (SDR) such as: nerve pain, scoliosis, degenerative disk problems, bowel and bladder incontinence, and sexual dysfunction issues?

73. CP is a complicated topic to explain, are there any studies going on regarding more global picture of CP, causes, prevention and occurrence ?

74. What best predicts employment for adults with cp

75. Can hypnosis be used effectively to control pain in people with CP?

76. Study the effectiveness of how cranial sacral therapy can help in managing Inter cranial pressure in hydrocephalus in persons with CP

77. How can healthcare professionals empower caregivers to incorporate play and social activities that typically developing children engage in, so that therapy is not the main focus for activity.

78. Which is more effective for intermediate and long term outcomes when comparing conventional physical therapies to intensive physical therapies to alternative therapies such as Feldenkrais or Anat Baniel Method?

79. Are stem cells in process to become a standard FDA approved treatment? How can the process be sped up?

80. What kinds of impacts does the "social life" (friendships, serious relationships, extra curricular activities, hobbies) have for someone with CP?

81. Study the merits and cost effectiveness of life-long periodic comprehensive evaluations focused on maintaining /improving function, mobility, seating, updating technology, exercise, etc.

82. What outcome tools or measurements accurately reflect functional and quality of life outcomes in people with CP?


83. Can intensive early motor training enhance independent mobility acquisition and trajectory (i.e. early treadmill training for L/E similar to constraint induced for U/E).

84. It is challenging to promote physical activity in CP based on the heterogeneity in CP. Is there a 'recipe' to improve the long-term health for people with CP, regardless of age and GMFCS level (i.e. type of physical activity, nutrition, etc, etc)?

85. How should we best evaluate surgical outcomes (i.e. Gait analysis), and how do we get such studies for all surgical candidates?

86. A separation of comparing neurosurgery( Selective Dorsal Rizotomy, (SDR) Intrathecal Baclofen pump, (IBP) to orthopedic surgeries (Selective Percutaneous Myofascial Lengthening (SPML),PERCS, etc-) ortho and neurosurgery should be studied separately

87. Will an integrated care pathway approach in patients with cerebral palsy needing surgery improve patient outcomes, improve patient safety and reduce costs & complications?

88. What are the most effective methods for improving oral motor control?

89. How do we assess long term outcomes in research? Does improvement in GMFM at age 3 have any significance at 13 or 30 years?

90. How can we address neuroplasticity in day to day exercises?

91. Comparison of Selective Dorsal Rizotomy only (SDR) (with no previous surgical interventions) to individuals with the same GMFCS levels ( With no previous surgical interventions) to study differences/ similarities in spasticity, posture and movement

92. More focus on how to treat the primary issue in CP as a "posture and movement disorder", and interventions on how to maximize Neuroplasticity, instead of just managing symptoms of spasticity (Baclofen, Botox) in persons with CP

93. What interventions actually improve quality of life? Orthotics, wheelchairs, assistive technology, gait trainers, etc?


94. What occupational therapy tools best capture progress of fine motor abilities over time? Which ones should be avoided?

95. Study the merits and cost effectiveness of life-long periodic comprehensive evaluations focused on maintaining /improving function.

96. Need more research about distonia (cp generally has more spasticity) and as I see this part is less studed

97. What are the long-term affects of using Botox on spastic muscles? Does it vary depending on the level of impairment? Do people's bodies respond differently causing different outcomes?

98. Research the long term effectiveness of the combination of intensive physical therapy programs like we get in Poland : lokomat + Galileo + horse riding + baneotherapie etc.They found that 4hours training per day during 2 weeks gives better results

99. How do we develop methodologies to assess / predict the long term outcomes of interventions without having to do prospective studies that take too long to be useful now

100. What do we know about the natural history of mobility through out the lifespan? Walking with or without devices? Wheeling -self propulsion an/or electric w/c?

101. Assessing the role technology has in helping those with motor dysfunction live more independent lives.

102. How do activities done in PT to improve function actually translate to daily lives of individuals with CP? For example, if an individual performs well on the treadmill during PT, how does that translate to walking on solid ground.

103. How do we balance treatments and interventions with other aspects of life such as academics, social life, work, etc - for individuals with CP and families with children with CP.

104. Study on how the polyvagal nerve branches influences sensory processing and sensory regulation in infants, children, and adults with CP to facilitate better treatment of sensory integration issues seen in CP.


105. Comparative study of therapies presented in a group environment vs. independent for both adolescents and adults, looking at both physical and emotional changes.

106. Adding to #20 - what interventions truly affect participation outcomes AND How do dose and intensity of any given intervention influence the short and longer term outcomes?

107. Many children with CP have difficulties with functional vision e.g. visual attention, motion processing, contrast. How can we best characterize and address these aspects of vision so that learning and habilitation strategies can be optimized for CP?

108. Duke University will start this year first clinical trail with donors stem cells for CP. So do Dr Joanne Kurtzberg, MD from Duke participate in your webinar program? So do Dr Joanne Kurtzberg, MD from Duke participate in your webinar program? more clinical trails in stem cells. It's hope to rebuild "dead zones" of the brain

109. Which environmental facilitators are associated with better participation outcomes for children and adults with CP? (Please edit to define environmental facilitators... also define participation in what)

110. What intervention strategies lead to increased participation in typical age appropriate Peer social and motor movement activities for ambulatory and non ambulatory children during pre-adult life.

111. Can we re-create the results that CPUp got in the first 10 years here in America? Can a combination of surveillance and postural management with some surgeries eradicate hip dislocation and decrease pain

112. What are the long term outcomes of SDR's and the comparison to the effects of long term physical therapy for patients in GMFCS II, III & IV classifications?

113. What nonpharmacologic treatments / integrative modalities are effective in helping kids with CP, self regulate, contributing to improved outcomes?

114. Find prognostic indicators that can better predict severity of CP in the neonatal population that has suffered CNS insults.

115. How can we effectively manage post impairment syndrome for persons with CP in thier adulthood lives?


116. How to identify and treat midline shift syndrome/ Visual issues in CP with the prisms/ therapy in collaboration with Neuro-optometrists

117. What is the effect of increased core stability on the quality and quantity of ambulation for children with CP?

118. How does cerebral palsy impact other medical conditions such as fibromyalgia?

119. How do we measure the true benefits of interventions in childhood where short term gains or complications seen in research are not necessarily indicative of long-term benefits or consequences in real life.

120. Is the developmental milestones of creeping and crawling an indicator of independent ambulation in children with CP?

121. What is the impact of ACTIVE movements (good/bad) from infancy on functional outcomes at adulthood?

122. Educate all Drs, specialists & therapists in all aspects of CP from birth to death. This must include Post Impairment Syndrome & the secondary complications people with CP experience as they age: how to minimize symptoms & maximize quality of life.

123. Create a CP brain donor bank for people with CP to donate their brains upon death, for scientific research on epidemiology, cerebrospinal tracks, Neuroplastisty Ect- to facilitate advancements in CNS treatments for persons with CP

124. comparative effectiveness of teleheath therapy interventions to in-person therapy interventions

125. While CP is said to not be hereditary, what genetic connections may exist? Or when is the last time this topic has been deeply explored? This may address questions from individuals with CP and/or their partners who are considering having children.

126. Comparative study of post surgical functional outcomes of PERCS versus Selective percutaneous myofascial lengthening's (SPML) and versus Single Event Multi-Level Surgery (SEMLS) in CP


127. Have there been any studies done on the effectiveness and benefit of using acupuncture and massage therapy to reduce pain and muscle tightness in patients with CP?

128. What methods and interventions have been shown to be effective for CP patients with low tone in their mouth and with swallowing? Reducing risks for aspiration, controlling excessive drooling, transitioning from purée to solid foods safely, etc.

129. I found and did for my son HBOt (hyperbaric) I'm sure you know about but I can say in case of my son his improvements are much more remarkable by Hbot than any other "standard " or even intensive rehabilitation ( clinical studies for hbot and cp!)

130. Is there a difference between different types of Botox available (e.g., Dysport) in the effectiveness, duration of action, and side effects?

131. what is the frequency and outcomes of adverse events for CP patients with tracheostomy and/or mechanical ventilation in the home? How can these events be avoided or minimized in the home?

132. How has the genesis of tablet-based communication systems impacted effective and available communication within the CP population, including those with alternative access needs?

133. How does Post- Impairment Syndrome affect people with cerebral palsy based upon the type of cerebral palsy the individual may have?

134. Why primitive reflexes are not looked at as part of the development of motor skills and treated in a systems approach for functional outcomes in CP

135. How can we optimize the eating habits of persons with CP throughout their lifespan, in order to avoid health consequences such as obesity and sleeping disorders.

136. Research alternative, homeopathic options, such as the use of curcumin (tumeric) in improving presentation of CP and TBI, if present. (There is research showing curcumin improved the neurological status of a TBI after 2 weeks in rats.)

137. Research into the factors causing problems with balance in CP. Is it multi-dimensional and what can help?


138. all réhabilitation therapies generally trying to develop Brain plasticity (so builds new connections in the brain) but can't get back damaged dead neurons.... Hopefully stem cells will and Hbot definitely can get parts (not dead yet but disconnected)

139. Is research being done on donated brains from deceased persons with CP to understand the epidemiology and develop better treatments to manage symptoms and target issues from the central nervous system VS peripheral or isolated approach to treatment

140. What stretching guidelines (minutes/day, hours/week; most important muscles to stretch; types of stretches; ways to stretch; reasons to stretch; more important times to stretch; easy/quick ways to stretch) can be developed?

141. Research looking into long-term stress due to a lifetime of using a walker, crutches, etc.

142. Study the use of Hbot after HIE and anoxic injuries at birth to determine if it should become standard protocol as cooling in order to save part of their brain cells and to give them better outcome . We need more studies about it .

143. A study is needed on non-traditional physical therapy such as pilates exercises focusing on neuroplasticity as well as oxygen therapy. The "invasive" therapies such as surgery have not been particularly helpful to me but the Pilates has.

144. What is the impact of vision (good/bad) on outcomes of individuals with CP? How much is vision impacting on mobility, hand use, communication? Does this impact other research? Can we provide interventions to optimise how children use their vision?

145. Does HBOT really help with spasticity or any of the other health issue relating to CP?

146. How has the characteristics/indications of the GMFCS levels in CP changed due to increased medical advances facilitating increased survival of lower gestational age and birthweight (23+ weeks in 2017 versus 27+ weeks in the 1970s) over the decades

147. Serial casting is a commonly used treatment for people with CP, but it can be done many different ways. There is a need to develop clear guidelines which determine when to cast and how to cast.

148. What activities or interventions can increase muscle development, strength for non ambulatory individuals with CP ?


149. What are the best outcome measures to use to judge that a treatment is effective in achieving what is most important for the patient or parent?

150. Study the merits and cost effectiveness of life-long periodic comprehensive evaluations focused on maintaining /improving function, mobility, seating, updating technology, exercise, etc.

151. Does maintenance of ambulation into adulthood improve health outcomes such as heart disease and diabetes? How does ambulation impact on pain and quality of life in adulthood

152. There are many interventions that facilitate changes in movement and posture but often fade away. What is happening in the brain during these times and what does it take for those changes to be sustained?

153. Some type of research on learning disabilities in kids with CP especially the inherent difficulties with math

154. Develop standardized ERAS (Enhanced recovery after surgery) guidelines for children with CP having surgery to reduce complications, length of stay and health related costs. This will translate to improved patient outcomes and enhanced value.

155. Can gait analysis predict health and function for people with CP, and what parameters of gait are the most significant predictors?

156. Do Ankle Foot Orthoses that provide appropriate weight bearing through the sole of the foot and allow plantar flexion at the propulsive phase of gait, lead to increases in daily walking and overall compliance for children with CP.

157. Does the use of equipment /positioning devices in a systematic 24 hour postural management program decrease the number of surgeries to correct deformity particularly in GMFCS III, IV and V.

158. What accommodations, strategies and technology are useful in academics to mitigate limitations due to the CP condition? E.g. Typing advanced Math work, organizing, receiving and submitting school work, and so on, so they can progress with peers.

159. Does pre-surgical intervention to address respiration and improved ribcage mobility through therapeutic facilitation and positioning programs effect a positive post-surgical change for adolescents undergoing spinal fusion surgery?


160. Does gait analysis improve patient related outcomes in ambulatory children with cerebral palsy needing single event multilevel surgery?

161. Can we develop a clinical framework to guide paediatric therapists in developing baseline standards of care to provide equitable and effective paediatric rehabilitation?

162. Study of how many adults with CP are gainfully employed, (GMFCS levels) and what support services they have to maintain gainful employment in the community.

163. What is the impact of power mobility on motor development, language development, and psycho-social development of young children with CP (GMFCS levels IV and V)?

164. Could Virtual reality be used as a possible therapy form in the future?As it is fun work kids and could be done at home.

165. Does CBD oil reduce spasticity in addition to helping reduce seizures?

166. Oral hygiene: What is the cavity rate index in persons with CP who have increased saliva, and those who do not have the manual dexterity to clean their teeth?

167. How to educate and train orthopedic surgeons in selective percutaneous myofascial lengthening's (SPML) so that it becomes a standard intervention for children and adults with CP

168. Does selective motor control predict the preservation of walking ability in GMFCS 3?

169. What intervention can be done to minimize complications of CP with level 4-5 patients (such as scoliosis, lung disease , contractures, pain, etc)

170. Comparative study of the qualitative and quantitative functional outcomes of SDR in each applicable GMFCS level for persons with CP


171. How can we get better data on the role of genetics and metabolic causes of cerebral palsy and ways to address those insults?

172. What are effective at-home therapies that include technologies with a data capture element that will allow clinicians and therapists to collaborate more effectively with parents to help create better outcomes for kids with CP?

173. How does Post-Impairment Syndrome affect people with cerebral palsy throughout all stages of adulthood?

174. How minimize and prevent PTSD and medical trauma in children and adults with CP resulting from medical interventions.

175. Comparative study of orthopedic surgical treatments for muscle, tendon, and myofascial, lengthening's (SPML, PERCS, Z -plasty, Ect-) to determine which treatment has the best long-term functional outcomes for ambulatory persons with CP

176. Research related to brain cooling right after an event and if it reduces the severity of cp symptoms or treatments to minimize effects of a stroke, bleed with severity of cp

177. How have the various orthopedic muscle and tendon lengthening's (PERCS, SPML, ect-) evolved or remained the same since their invention, and what are the short-term & long-term quantitative functional outcomes in children & adults with CP.

178. How can we measure outcomes for patients with dystonic CP so that we can determine which treatments are most effective?

179. Comparative study with PERCS vs. Power Training/Strength Training, to look at ROM, hip development, foot/ankle flexion, endurance and GMFCs gains/losses.

180. Does a child/adult with CP benefit from NPO status? Can NPO be a barrier to ongoing management of secretions or an adequate and intact swallow? Is the elimination of oral presentations really best practice if we want to optimize function?

181. Comparative study of post surgical recovery time of muscle and tendon lengthening's VS. Selective Percutaneous Myofascial Lengthening's (SPML) in children and adults with CP


182. What is the effect of current orthotic management in ambulatory children with CP? What do persons and families feel is helpful in orthotic management across the lifespan?

183. Evaluate the functional outcomes and quality of life improvements of surgical interventions in children with high tone, but without typical indications for surgery (e.g., contractures, hip subluxation).

184. Comparative study looking at SDR independently, SDR with PERCS, SDR without PERCS and PERCS independent of SDR, to look at what presents with the optimal outcome and with what presentation of CP each option is optimal for.

185. How can we facilitate clinicians to contribute to research data? What minimum standards and methodologies would be appropriate and how can we use smart / emerging technology to assist.

186. How can the effects of Post-Impairment Syndrome be minimized for people with cerebral palsy throughout all stages of adulthood?

187. What role do primitive reflexes play in the individual with CP? What allows a reflex to resolve and how do these reflexes interfere in the attainment of new skills?

Underserved Ideas Underserved ideas were ideas considered by the leadership team to be either important but judged to be under represented because of the prevalence of the community participating in Research CP, e.g., dystonia, or deemed to be under researched for a given population, e.g., ideas for research for GMFCS IV and Vs.

Source Rank Idea Notes / Justification

Research 22 What is the optimal combination and dosage of positioning devices in a postural management

program for decreasing the incidence of contractures, deformities, hip subluxations,

scoliosis, pain and the number of surgeries needed in GMFCS III-V.

GMFCS III-V population

Research 27 We need to move beyond surgery and positioning as the primary alternatives for GMFCS 4-5. What

outcome measures are most sensitive and reliable for GMFCS 4-5? Without adequate outcome

measures we are unable to develop and test new interventions.

GMFCS IV-V population


Research 36 Can neurophysiologic measures be used to distinguish spasticity from dystonia in order to tailor interventions for patients with CP?

Dystonia is less common, under dx’ed and makes treatment more difficult.

Research 39 For GMFCS III and some IV, what factors can best help determine that power mobility will be superior to walking to promote independence, self-efficacy, and success in social & educational settings without adversely affecting ambulation of GMFCS III?

GMFCS III-IV population

Research 48 Is it possible to improve sleep quality and reduce pain in people with CP through use of therapeutic positioning in a 24-hour postural management approach?

GMFCS IV-V implied (need of positioning)

Research 21 not much work has been done on the cognitive impairments including difficulties with math and any subject with spatial orientation

Under researched topic

Care Treatment

25 Information/research on common emotional/behavioral/sociological conditions affecting people with CP and how to best support our children's mental health and well-being as they develop and age.


Research 28 In patients who are non-verbal, and deemed cognitively delayed, is there a way to gauge perception of pain and other environmental stimulus? Those who are deemed to be reacting, could we improve their ability to communicate discomfort or desires?


Care Treatment

31 What technologies can help those individuals with the greatest motor impairments (for example, brain computer interface, improved eye gaze) and how can we make them more obtainable and efficient to use?


Research 37 Comparative study of different surgical treatments for scoliosis (Spinal fusions, titanium rib, rods,) what are the long-term functional outcomes for children with CP Does it really preserve respiratory function or create more pain & limited mobility


appendix 1 - aacpdm

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