The healthy life every child deserves Sanford World Clinic’s expansion continues

WINTER 2013 | SANFORDHEALTH.ORG

discoveriesWinter 2013

Sanford Health Development & Research1305 W 18th StreetPO Box 5039Sioux Falls, SD 57117-5039

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Message from Andy Wentzy 2The Healthy Life Every Child Deserves 3Updates from Development & Research 6Events Calendar 12

Six years ago, Sanford Health launched the World Clinic initiative to ensure children around the world have consistent access to quality health care. As additional international opportunities have been recognized, particularly in developing nations, the scope of the initiative has evolved beyond pediatric care. Today, Sanford World Clinic staff and physicians impact thousands of children and families. Each in a uniquely complex environment, the clinics require the development of innovative, sustainable models and foster the organization’s commitment to improving the human condition. As the World Clinic team continues its work with community leaders, partner organizations and philanthropists, impactful projects will emerge from points around the world. Unlike any other initiative of its kind, Sanford Health is providing permanent primary care infrastructure that will serve generations.

Andy WentzyDirector of the Sanford Initiatives

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messagefrom Andy Wentzy

At Sanford Health, we are committed to taking care of kids, both near and far. As part of the Sanford World Clinic’s initiative to expand access to primary care to those who need it, a new pediatric clinic will open in the northern region of Kunming, China.

The clinic was developed through collaboration between Sanford and YMCI Calmette Medical Investment & Management Company, Ltd. The clinic is expected to open in spring 2014.

Kunming is the capital and the largest city of the Yunnan province, located in southwest China. With a population of more than 6 million, Kunming is the political, economic, communications and cultural hub of Yunnan and is the seat of the provincial government.

The northern area of Kunming has a service area of over 600,000 people and includes 60 kindergartens, 30 primary schools and 11 middle schools. But with all of the progress throughout the city, pediatric care

the healthy life every child deserves Sanford World Clinic’s expansion continues

is lacking in the region. Under the management agreement with YMCI Calmette, a state-owned company of the Yunnan Provincial government, Sanford hopes to change that.

“The decision to expand our work into China stems from our goal to expand health care services to areas of need, and better understand how health care is delivered in other parts of the world,” says Jim Slack, Sanford World Clinic vice president. “We are confident we can provide guidance to help YMCI Calmette achieve its mission to deliver the best care in the region.”

YMCI Calmette currently operates the non-profit First Hospital of Kunming, which was established in 1914 and is rated as one of the top 100 hospitals in China. YMCI Calmette is developing a new 1,000-bed hospital complex in the northern part of Kunming, which will include the pediatric clinic.

The new Sanford World Clinic in Kunming will have the capacity to hold up to 10 primary care pediatric physicians. YMCI Calmette may also utilize the clinic for rotating pediatric sub-specialists. The facility

contains four stories in total with two stories each containing 9,000 square feet of space, which will be designated to Sanford World Clinic.

Once the clinic is complete, Sanford will mentor a team of Chinese pediatricians to incorporate with Western clinical care models and work flows to help provide the best care possible for the region’s youngest patients.

“The medical community in Kunming has the desire to provide better pediatric care,” says World Clinic Clinical Services Director Ann Mays. “This is where Sanford can step in and provide insight to the medical team in China for a significant impact on how children are treated in the future.”

The connection to Kunming and YMCI Calmette was made possible through Zhiguang Guo, MD, PhD, research scientist with The Sanford Project (finding a cure for type 1 diabetes) who had previously worked with one of YMCI Calmette’s physician leaders.

“I first met one of the physicians, Dr. Zhao, when he worked as a surgeon

in a hospital in Beijing many years ago,” says Dr. Guo. “When I was invited to return for a meeting in Beijing years later, I mentioned to Dr. Zhao about Sanford World Clinics.”

After that discussion, Sanford was invited to visit Kunming and explore the possibility of establishing a clinic in the region.

“Thanks to the hard work of the Sanford World Clinic team, Sanford World Clinic – Kunming will be opening soon,” says Dr. Guo. “I think there are a lot of similar opportunities in China that are worth exploring in the future, as well.”

Sanford is in pursuit of what no one else has done. Engaging international organizations and partners that share in our commitment to expand health care in areas of need.

“We believe permanent, accessible, primary health care is a fundamental human right,” says Slack. “By developing a pediatric clinic in China, we are entering into a marketplace where millions of

lives could be impacted.”

Sanford World Clinic will partner with YMCI Calmette Medical Investment & Management to bring Kunming much-needed pediatric care to its population of over 6 million.

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In October, Sanford World Clinic started construction on its fifth Ghana clinic.

World Clinic Updates from Around the Globe As Sanford World Clinic continues to find ways to serve more children through its mission, it is equally focused on expanding services in its existing locations. See how these clinics are continuously working to improve and expand care to children and families.

Duncan, Oklahoma  •   Same Day at Sanford was 

launched in September. The service provides the Duncan community with same-day access for pediatric primary care illness and injury.

  •   Pediatric Allergy service is now available. In October, the clinic started providing individualized evaluation, diagnosis and treatment of allergies for children.

  •   The Duncan clinic is recruiting its potential third and fourth pediatricians for the clinic over the next quarter.

Oceanside, California  •   Patient volume continues to 

grow and the clinic will reach full sustainability this year.

Klamath Falls, Oregon  •   The clinic celebrated its one-

year anniversary in October and launched Same Day services.

  •   The Klamath Falls clinic currently has 3.5 providers and is on track for sustainability over the next year, ahead of planned goals.

Ghana, Africa  •   In October, construction began 

on Ghana’s fifth clinic located in Kasoa. It is expected to be completed in May 2014.

  •   Clinics in Mankessim and Adenta will be accredited by the National Health Insurance System (NHIS) in November. With the government accreditation, patient volumes are expected to double or triple.

  •   The team is working to expand clinical services across its network (e.g. prenatal/antenatal care, eye care, maternity care).

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Sanford ResearchSanford Research President Continues to Advance Global FASD Research Sanford Research President Gene Hoyme, MD, recently returned from South Africa where he examined 300 infants and children as a continuation of his 32 years of Fetal Alcohol Spectrum Disorders (FASD) research.

Dr. Hoyme has led fetal alcohol syndrome research studies in South Africa for the past 16 years and helped establish the prevalence rate of fetal alcohol syndrome in South Africa, which remains the highest documented rate in the world. He has focused much of his work in the wine-producing region of the Western Cape Province near Cape Town, where the pervasiveness of FASD in the offspring of farm workers approaches 8-10 percent.

His recent trip involved investigating the most accurate methods of diagnosing affected infants and young children, and included American investigators at Wayne State University, Detroit and South African investigators at the University of Cape Town. Dr. Hoyme’s particular interest and passion has been in early and accurate diagnosis of affected children and better understanding their continuum of disabilities.

He has also worked as part of other international research teams in Finland

and Italy. In 2005, Dr. Hoyme led a team that published criteria for the diagnosis of FASD. These criteria, known as the “Hoyme Criteria,” have been applied to thousands of alcohol-exposed children worldwide.

Dr. Hoyme is a board-certified medical geneticist and pediatrician. He was recognized nationally for his leadership and research last year by the National Organization on Fetal Alcohol Syndrome, joining the ranks of almost 40 past recipients that include Senator John McCain and the late Ted Kennedy.

updates

Sanford Research President Gene Hoyme, MD has led fetal alcohol syndrome research studies in South Africa for the past 16 years.

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Sanford’s Children’s Health Research Center Receives $11.6 Million Grant

A five-year grant of more than $11.6 million from the National Institutes of Health’s (NIH) Centers of Biomedical Research Excellence (COBRE) will support the Children’s Health Research Center at Sanford Research.

The center is led by David Pearce, PhD, vice president and chief operating officer for Sanford Research.

The Children’s Health Research Center focuses on pediatric translational research and is the home to several research initiatives designed to understand the underlying basis of several congenital defects and childhood diseases. Among those diseases are neurodegenerative disorders, pediatric brain cancers, cystic kidney disease, primary ciliary dyskinesia, developmental defects of the nervous system and pancreas, oxidative injury in the perinatal lung, disorders relating to defects in the cell nucleus and fatty acid deficiencies in newborns.

The center’s team is comprised of expertise in a wide range of disciplines, including genetics, molecular biology, cell biology, developmental biology and biochemistry. The Coordination of Rare Diseases at Sanford (CoRDS), an international and central registry

of individuals who have been diagnosed with a rare disease, is a cornerstone program within the Children’s Health Research Center.

“This grant demonstrates NIH’s commitment to the capable team of researchers in Sanford Children’s Health Research Center as well as the overall organizational vision of Sanford to improve the health of children across the globe,” said Pearce.

The Children’s Health Research Center also includes collaboration with the Sanford-Burnham Medical Research Institute in La Jolla, CA.

First Annual Fetal Alcohol Spectrum Disorder Symposium Slated for February“Sanford Fetal Alcohol Spectrum Disorders Symposium: Translating Discovery into Diagnosis, Treatment and Prevention” will be held on February 27 at the Sanford Center. Videoconferencing to regional Sanford sites will also be made available for this first-time event.

Clinicians, scientists, counselors and educators are encouraged to attend this one-day educational event featuring globally and nationally renowned Fetal Alcohol Spectrum Disorders experts, including: Kenneth R. Warren, PhD, National Institute on Alcohol Abuse and Alcoholism; Kenneth L. Jones, MD, UC San Diego School of Medicine; Peter Hammond, PhD, University College London; Philip A. May, PhD, University of North Carolina; Hannah Kinney, MD, Harvard Medical School and Children’s Hospital Boston; Prachi E. Shah,

MD, University of Michigan Health System; and Sanford Research FASD experts, Gene Hoyme, MD and Amy Elliott, PhD.

Email Cathy Roling at cathy.roling@sanfordhealth.org or Amy Baete at amy.baete@sanfordhealth.org with questions about the event. Go to sanfordresearch.org, Keyword: FASD Symposium to register.

Two NIH Grants Offer More than $2.6 million

A pair from Sanford Research has received separate grants from the National Institutes of Health (NIH) totaling more than $2.6 million for studies involving genomic proteins and a cancer-killing drug.

Kyle J. Roux, PhD, earned a five-year, $1.52 million award from the NIH’s National Institute of General Medical Sciences (NIGMS) for his project titled “Developing methods for proximity-dependent protein labeling.”

Keith Miskimins, PhD, and his study, “Molecular mechanisms by which the diabetic drug metformin kills cancer cells,” will receive more than $1.18 million over four years from the NIH’s National Cancer Institute (NCI).

A five-year COBRE grant of more than $11.6 million will support the Children’s Health

Research Center at Sanford Research.

Keith Miskimins, PhD, Cancer Biology

Research Center

Kyle J. Roux, PhD, Children’s Health

Research Center

Sanford Research President Gene Hoyme, MD examines an infant during his most recent research trip to South Africa, which remains the highest documented rate for Fetal Alcohol Spectrum Disorder in the world.

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Last year, Dr. Roux unveiled a new way to identify the proximity and interactions between proteins in living cells called BioID. The system provides insight into the underlying mechanisms of disease. His grant will allow him to further develop BioID and advance the rate at which scientists characterize proteins and their interactions, which helps in the design of therapies for human disease.

“With the human genome sequenced, we have now shifted our attention toward the challenging task of characterizing the protein products of that genome,” said Dr. Roux. “The results of this study will provide the research community with the fundamental knowledge of the capabilities of BioID.”

Dr. Miskimins’ study will explore the molecular and cellular mechanisms by which metformin, a drug used to treat type 2 diabetes, kills cancer cells. In cultured cells and animal models, metformin has been found to kill

cancer cells and slow tumor growth, but the drug behaves differently when other compounds are present or nutrient availability changes.

“We want to understand how the combinations of other compounds and nutrients affect cancer cells at the molecular level and provide a rationale for how they might be used clinically,” said Dr. Miskimins. “While this study will primarily focus on breast cancer, the results could be applicable to many types of cancer.”

Edith Sanford Breast Cancer Partners with Athena Breast Health Network to Personalize Breast Cancer Risk Assessment

Edith Sanford Breast Cancer (ESBC) is partnering with the Athena Breast Health Network, a University of California program, to advance the use of a personalized breast cancer risk assessment.

The innovative program includes a breast cancer risk assessment tool and a care plan for high-risk patients. Additionally, it will offer patients the opportunity to participate in research aimed at gaining a better understanding of breast cancer and its risk factors, ultimately raising the standard of care for women everywhere. This program marks another milestone in ESBC’s mission to end breast cancer.

Athena Breast Health Network is a collaboration among the five University of California medical centers. ESBC is its first partner outside of California and was selected because of its expertise in breast cancer genomics and its ability to integrate the risk assessment into patient care.

“This new partnership allows us to use the latest risk assessment technology to uncover a woman’s potential to develop breast cancer and to then to develop customized care plans for her,” said Thomas Cink, MD, a fellowship-trained breast radiologist with Edith Sanford. “A risk factor is anything that increases a person’s chance of developing cancer. Risk factors don’t necessarily mean a woman will develop breast cancer, but understanding them allows a woman and her physician to make more informed health care and lifestyle choices.”

As part of the new standard of care, prior to a breast screening (mammogram) appointment, Sanford Health patients will complete an Athena screening questionnaire online at home or in the clinic. Patients identified with an elevated risk will be referred to additional resources and specialists including risk-reduction programs and/or genetic counseling.

In the near future, Athena will integrate breast density and small variations in inherited gene profiles, or so-called single nucleotide polymorphisms (SNPS), into the standard risk assessment process. The Athena Breast Health Network already has collected patient-

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reported data on more than 41,000 women and 7,900 biospecimens from women across the state of California. In addition, the network has identified 673 women at elevated risk for breast cancer and completed 466 elevated-risk consultations with breast health specialists.

Sanford patients who complete the survey also will be given the opportunity to participate in research to further scientific knowledge on the development of breast cancer. One of the program goals is to engage the support of 4,000 women diagnosed with breast cancer to participate in a study to identify DNA, or genetic, markers.

“This milestone collaboration will benefit our patients today and women everywhere tomorrow,” said Brian Leyland-Jones, MB BS, PhD, director of Edith Sanford’s genomic research program. “With the help of those women who volunteer to participate in the study and through genomic sequencing, we will strive to better understand what drives breast cancer at the molecular level so we can improve treatment and someday prevent the disease altogether.”

Sanford Health will begin implementing the Athena screening and risk assessment model in pilot locations in the coming months. Athena will be implemented across the Sanford Health system beginning in 2014.

Pearce Receives National Recognition: Honored for “moving the bar” in rare disease research Sanford Research’s David Pearce, PhD, was recently honored as a 2013 RARE Champion of Hope by Global Genes and the RARE Project.

The RARE Champion of Hope Award recognizes an individual who is moving the bar in rare disease research and science at the national level. Whether from academia, industry, the clinic or an advocacy

group, this person works to advance research for a specific rare disease or is a key agent in the provision of tools and approaches to developing and/or delivering more effective treatments for the rare disease community.

Dr. Pearce serves as vice president and chief operating officer of Sanford Research and director of Sanford Children’s Health Research Center. He is one of the world’s leading researchers of Batten disease and also established the Coordination of Rare Diseases at Sanford (CoRDS) program.

Pearce accepted the award this fall at the RARE Tribute to Champions of Hope ceremony in Newport Beach, CA.

“Dr. Pearce’s dedication to the exploration of rare diseases is well-known and respected by those in our national scientific community,” said Sanford Research President Gene Hoyme, MD. “His commitment to provide families with answers through research and advocacy inspires and motivates all of us.”

Global Genes and the RARE Project, which coordinates the Champion of Hope Awards, represent the roughly 30 million Americans and approximately 350 million people worldwide who are affected by rare genetic diseases and disorders. In the United States, a disease is

considered rare if it affects fewer than 200,000 people in the United States. According to the National Institutes of Health, there are nearly 7,000 such rare diseases, and an estimated 95 percent do not have a single approved drug treatment. RARE is an acronym for Rare Diseases Awareness Research Education.

Second Annual Genomic Symposium Held at Sanford ResearchAlthough the event’s speaker line-up included keynote presentations from the National Institutes of Health, the federal government shutdown didn’t stand in the way of a successful Second Annual Genomic Symposium at Sanford.

“The highlight of the symposium was being able to share ideas and learn from a very diverse group of genomic experts,” said Gene Hoyme, MD, Sanford Research President and Chief Academic Affairs Officer for Sanford Health.

Presenters included Jeffy Murray, MD, University of Iowa; Jeffrey Trent, PhD, TGen; Matt Huentelman, PhD, TGen; Brian Leyland-Jones, MB BS, PhD, Edith Sanford Breast Cancer Research; Megan Landsverk, PhD, Sanford Clinical Molecular Genetics Laboratory; and Gene Hoyme, MD, Sanford Research.

Sanford Research’s David Pearce, PhD, was honored as a 2013 RARE Champion of Hope. He is pictured with fellow honoree Dr. John C. Carey, Professor and Vice Chair, University of Utah Health Sciences Center and School of Medicine.

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Collaborative Research Center for American Indian Health Announces 2014 Pilot Grants ProgramThe Collaborative Research Center for American Indian Health (CRCAIH) has announced the 2014 Pilot Grants Program – Request for Applications (RFA). They are looking to fund pilot research projects focused on examining the social determinants of American Indian health with transdisciplinary teams.

Go to sanfordresearch.org/crcaih to view the application and RFA, which details the instructions, purpose and eligibility, resources available, and important dates for the pilot grant program applications. Projects with timelines of one year and budgets of $25,000-$80,000 will be accepted. Applications are due February 24, 2014 at 5 p.m. CST to the Sanford Research Grants Office.

Questions can be directed to info@crcaih.org. CRCAIH is excited to work with interested applicants ahead of time and connect them with additional CRCAIH resources for community and cultural assistance, regulatory knowledge, and methodology guidance. They are holding webinars on available CRCAIH resources, writing a pilot grant, and grant technical assistance.

MN Vikings & Sanford Award Local High School with Concussion Awareness, Prevention Technology Grand Prize The Minnesota Vikings have partnered with Sanford Health this season to promote new concussion technology app from X2 Biosystems. The X2-ICE app is a version of the sideline concussion app that is mandated for use by all 32 NFL teams in 2013. X2-ICE provides for the cloud based data storage of an athlete’s prior examinations which allows for immediate real-time comparison when a player has a suspected concussion.

Sanford Health was instrumental in getting concussion legislation passed in South Dakota, North Dakota and Minnesota in 2011. The organization has a reputation of being advocates for children who compete in athletics, especially in the areas of brain health and brain injury.

Earlier this year, representatives from high school football programs in South Dakota, North Dakota and Minnesota were invited to fill out a concussion awareness survey for the chance to win a new iPad with the X2 ICE app. Eight finalists were selected, and one school was awarded

the grand prize – a 24 person suite to the Vikings versus Eagles game on Dec. 15 and a surprise appearance by the Minnesota Vikings. The grand prize-winning entry was submitted by Lincoln High School in Sioux Falls, SD. On Oct. 29, Toby Gerhart and Josh Robinson made a surprise visit to the Lincoln High School football team’s practice to award the prizes.

“Sanford Health is proud to partner with the Minnesota Vikings and X2 Biosystems to put state-of-the-art concussion management technology in the hands of high school athletic trainers throughout our Sanford Health footprint and beyond,” said Thayne A. Munce, PhD, associate director of the National Institute for Athletic Health & Performance at Sanford Health. “If an athlete gets a concussion, it is vital the injury is properly recognized and managed. The X2 ICE app, used by every NFL team, gives athletic trainers in our communities an advanced sideline tool available to care for the brain health of young athletes.”

Sioux Falls’ Lincoln High School football team wins first prize in a MN Vikings/Sanford concussion awareness contest.

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The Sanford PROMISE PROMISE to Develop Sequencing Curriculum Liz McMillan was awarded a grant from the Sanford Health Foundation for her project entitled, “Next Generation Sequencing Curriculum.” Together with the Sanford Health BioBank, The Sanford PROMISE will create a curriculum and set of activities to educate students and community members through a variety of PROMISE programs, including Life Science Discovery, The Sanford PROMISE Community Lab, and the Educator Enrichment Workshop, Interactive Video Conferencing, and Equipment Sharing Program. The new curriculum will focus on the process, techniques, and outcomes of next generation sequencing utilizing the Sanford Health BioBank’s Ion Torrent Sequencing technology.

PROMISE’s Life Science Discovery Program Travels to North Dakota College of Science and Technology SkillsFargo area students had an opportunity to brush up on their science skills just before the school year. The Sanford PROMISE’s Life Science Discovery Program offered programming at the North Dakota College of Science and Technology Skills and Technology Center. Thirteen attendees spent two and a half days working hands-on with Sanford PROMISE instructor Adam Heck learning about researching rare diseases. Fargo teacher, Paul Kolesar, taught the Forensic Lab Science Workshop to a second group of participants.

Sanford Summer Research Symposium Increases Reach The 2013 Sanford Summer Research Symposium in August had a record 63 posters presented by summer research students at Sanford and partner institutions through the Sanford Program for Undergraduate Research (SPUR), the Summer Undergraduate Research Experience (SURE), the Sanford PROMISE Scholar Program, the Science Education Research Fellowship, and BRIN. There was a record audience to discuss and learn about the posters, as well.

Children’s Health and Fitness Initiatives: fitOffline and Online Efforts Continue to Expand With a combination of both offline and online efforts, fit continues to grow and make an impact on children and families.

Offline Efforts  •   Both fit4schools and fitClub4

Girls have entered their second year of pilot programs. The fit4schools pilot has expanded to 37 classrooms in three schools in Vermillion, SD. fitClub4 Girls has evolved to include a “trainer” module to enable community members, such as elementary teachers or college students, to learn about and lead their own fitClubs. fitClub has grown to encompass nine schools in the Sioux Falls School District with six out of the nine clubs being led by community members.

  •   fitCare continues to boost its reach to approximately 750 childcare providers in South Dakota impacting over 7,000 children. The State of South Dakota has also recognized fitCare as a key program that is contributing to positive gains in their reduction of childhood obesity.

Online Efforts  •   The fit websites for both children

and parents have also seen steady growth. Over 200 pieces of new content were added over the past year. The sites have also reached the six million visitor mark since their launch and average over 200,000 visitors per month.

  •   The first app in the suite of fit apps has launched. MOVE2draw is now available on iOS and Android and can be found at www.move2draw.com.

  •   fit4theClassroom, an online school resource developed in cooperation with Discovery Education, has now entered the second year of the program. New interactive lesson plans have been developed and another national sweepstakes kicked off in September. To date, the new lessons have been downloaded more than 2,000 times and there have been over 14,000 sweepstakes entries.

The 2013 Sanford Summer Research Symposium in August had a record 63 posters presented by summer research students.

fitClub4 Girls has evolved to include a “trainer” module to enable community members, such as elementary teachers or college students, to learn about and lead their own fitClubs.

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events give.If you are interested in providing philanthropic support for any of the research or major initiatives featured in this publication, please contact the Sanford Health Foundation. Thank you.

Sioux Falls Region: (605) 328-5700

Fargo Region: (701) 234-6246

Bismarck Region: (701) 323-8450

Bemidji Region: (218) 333-5515

foundation.sanfordhealth.org

Edith Sanford Breast Cancer Foundation: (855) 463-3484

edithsanford.org

January 9: Sanford PROMISE Community Lecture Series Meteorological Science in South DakotaJay Trobec, PhD, Chief Meteorologist, KELO-TV, 5:30-6:30 p.m. February 13: Sanford PROMISE Community Lecture SeriesBack to Basics: The Role of Basic Research in a Clinical WorldPeter Vitiello, PhD, Associate Scientist, Children’s Health Research Center, Sanford Research, 5:30-6:30 p.m. February 27: Sanford Fetal Alcohol Spectrum Disorders SymposiumTranslating Discovery into Diagnosis, Treatment and PreventionClinicians, scientists, counselors and educators are encouraged to attend this educational event at Sanford featuring globally and nationally renowned Fetal Alcohol Spectrum Disorders experts., 8 a.m. – 4 p.m. February 27: Sanford PROMISE Community Lecture Series Special Rare Disease Day LectureMichael Kruer, PhD, MD, Pediatric Neurologist & Associate Scientist, Children’s Health Research Center, Sanford ResearchA Day in the Life of a Physician-Scientist, 5:30-6:30 p.m. February 28: Fourth Annual Sanford Rare Disease SymposiumPresented by the Coordination of Rare Diseases at Sanford (CoRDS) and the Sanford Children’s Health Research Center, 8 a.m.-4 p.m. March 13: Sanford PROMISE Community Lecture SeriesWhen Your Powerhouse Goes Bad: Mitochondrial Diseases & DisordersMegan Landsverk, PhD, Director, Clinical Molecular Genetics Laboratory, Sanford Health

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