an overview of researchmatch.org the national recruitment ... · an overview of researchmatch.org...
TRANSCRIPT
An Overview of ResearchMatch.org
The National Recruitment Registry Project
Kirstin Scott, MPH
Vanderbilt Institute for Clinical and Translational Research
April 30, 2010 – Johns Hopkins ICTR Symposium
THE PROBLEM OF PARTICIPANT RECRUITMENT
GROUP 1
WILLING RESEARCH
VOLUNTEERS ARE
LOOKING FOR STUDIES
GROUP 2
RESEARCHERS ARE
LOOKING FOR STUDY
VOLUNTEERS
THE STAKEHOLDERS
THE PROBLEM
THEY ARE NOT
CONNECTING
EASILY
DEVELOPING A NATIONAL SOLUTION
Creating ResearchMatch.org
Overview of ResearchMatch.org
What is it? What is it not?
A new web-based „matching‟ tool to help
volunteers easily connect with research
studies
An innovative national partnership to
develop a centralized web-based
recruitment registry
A free, complementary recruitment tool
Secure & promotes volunteer choice at
all levels
Institution-neutral
CTSA-wide activity
Disease-neutral
Anyone residing in the US can join
The end-all solution to participant
recruitment
A replacement for successful,
existing recruitment efforts
A tool that permits „cold calling‟
volunteers
A final product (constantly evolving)
Background
Seed funding through the Clinical &
Translational Science Awards (CTSA)
NIH/NCRR
Vanderbilt University received 1 year
supplement grant to develop national model
based on local registry experience
Currently, institutions from 41 CTSA sites
constitute the ResearchMatch Network
At least 1 Institutional Liaison per site
101 Liaisons total
Provide local oversight and usage of tool
Collaborative project hosted at Vanderbilt and
overseen by the Vanderbilt IRB
Network
How does ResearchMatch actually work?
VOLUNTEERS(must reside in US)
RESEARCHERS (from participating
institutions)
LIAISONS
Volunteer & Researcher Connection
Step 2: Registered researchers
search database for individuals
(identifiers suppressed) based on
study inclusion criteria.
Step 1: Potential volunteers (or their
parents/caretakers) self-register to
indicate a willingness to be
contacted for research studies.
Volunteer & Researcher Connection
Step 3: Researchers send IRB
approved recruitment message to
„matched‟ volunteers. Volunteers
may then opt to share identifiable
information for direct contact.
Step 4: Researchers contact
interested volunteers and follow
normal study consent procedures.
Researcher & Liaison Connection
Step 1: Researcher (PI or
coordinator) registers and
provides information regarding
IRB-approved protocol.
Step 2: Researcher can search
registry with feasibility access
(aggregate data) while recruitment
request pending liaison review.
Researcher & Liaison Connection
Step 4: Researcher is notified of
approval via email and can begin
to search registry and contact
potential matches for their study.
Step 3: Liaison receives access
request. Approves request by
setting expiration date to match IRB
approval expiration.
Visitor Activity
ResearchMatch Home Page (www.researchmatch.org)
Google Analytics – Site Visitors
NIH/NCRR Press ReleaseMarch Volunteer
Registration Campaign
International Visibility – Visitor Analytics
NIH/NCRR/CTSA Engagement
Original funding under the CTSA Informatics arm (2008)
Regular webinars to engage all CTSA institutions in development process (2009)
40 CTSA sites have joined the Vanderbilt CTSA to develop ResearchMatch.org
Development of CTSA-wide „agreement‟ (March 2009)
Signed legal agreement to participate
Leveraging the CTSA Consortium
CTSA Communications KFC NIH/NCRR Press Release (November 2009)
NCRR Reporter (Winter 2010)
Tiger Team Communications Request (March 2010 – current)
Examples of NIH collaboration
GARD Rare Diseases Information Center (NIH ORDR)
NIH Clinical Research Center
NIH MedLine Plus (Winter 2010)
NCRR Reporter (Winter 2010)
National Library of Medicine / RxNorm collaborations
ResearchMatch Progress – In Phases
Phases of ResearchMatch
Development Phase
December 2008 - 1st Stakeholder Meeting (Nashville, TN)
July 2009 - Beta Testing
Finalize policies & institutional agreement (signed by 41 CTSA institutions)
September 2009 - activation of www.researchmatch.org
Phase 1a (November 2009 – March 2010) Focus: Volunteers
NIH/NCRR Press Release (11/01/09)
Volunteer registration - national launch
Liaison training
Capture researcher interest through Interest Form
Phase 1b (March 24, 2010 – current) Focus: Researchers
Release of researcher tools (feasibility & recruitment access)
3/30/10 – ResearchMatch 1st Match
ResearchMatch - Volunteers
Registry Population - Growth
6290 volunteers
5892 registrants
398 guardians
338 guardians registered as
volunteers (disease-neutral)
Volunteers registered from
49 of the 50 states
Total Volunteer Registration = 6290 (9 April 2010 – 6:00am EST)
Volunteer Registration (by state – density map)
Total Volunteer Registration = 6290 (9 Apr 2010 – 6:00am EST)
Volunteer Registration (count by state – 4/9/10)
State:Count State:Count State:Count State:Count State:Count
AK:4 GA:129 MD:63 NJ:38 SD:3
AL:363 HI:3 ME:7 NM:9 TN:1320
AR:45 IA:347 MI:30 NV:13 TX:417
AZ:34 ID:5 MN:388 NY:490 UT:19
CA:202 IL:306 MO:185 OH:769 VA:46
CO:26 IN:21 MS:12 OK:12 VT:3
CT:18 KS:10 MT:2 OR:165 WA:39
DC:16 KY:36 NC:279 PA:48 WI:32
DE:4 LA:11 NE:9 RI:3 WV:2
FL:112 MA:58 NH:2 SC:134 WY:1Volunteer Count – states with CTSA institution(s) denoted in darker shading
Volunteer population - snapshot
Disease Neutral
84.5% of guardians also register
as volunteers
Gender
73.7% Female
26.1% Male
0.2% Transgender
Race
83.7% Caucasian
7.8% African American
Types of volunteers
46.9% = “Healthy Volunteers”
Volunteer population - snapshot
Volunteer population - snapshot
ResearchMatch - Researchers
Site provides mechanism to
capture researcher interest
Unsolicited but publicly available
Period: 10/2009 – 3/2010
492 interest forms received
382 researchers from CTSA
institutions
Researcher Tools “Pre-Release” – Interest Forms
Researcher Interest Forms – CTSA Researchers
52
Total # of interest forms from CTSA researchers prior to researcher tools release = 382
Researcher Tools “Release”
Researcher tools released to each
participating institution on
3/24/2010
Controlled release to pilot group of
researchers at each site (03/2010)
Streamline institutional liaison
role & function
1st “match” occurred March 30th
FUTURE DIRECTION
Timeline Overview - Highlights
December
2009
January
2010
February 2010March
2010
April
2010
September
2009
October
2009
November
2009
• National „soft‟
Launch
• Finalize
communications
plans
• Monitor soft
launch
• 11/10
NIH/NCRR
Press Release
• Populate registry
• Finalize Liaison
components
• Populate registry
• Liaison trainings
• Finalize testing of
Researcher Tools
• Consortium
building – weekly
calls
• Populate registry
• Researcher Tool
Release (pilot
release at each
site)
• 1st Match (3/30)
• Enhance
researcher
involvement
• Streamline
institutional
policies/tutorials
May
2010
• Outreach to
associations &
organizations +
patient advocacy
groups
June
2010
• Program
evaluation
• Evaluate plan for
expansion
ResearchMatchgrowth
Researcher growth
Volunteer growth
Concept for new “Resources” component
Background ResearchMatch „knows‟ medical
conditions for each volunteer
Patient advocacy groups and/or partnering disease foundations can specify condition(s) relevant to their organization
Outcome ResearchMatch can „link‟ registered
volunteers to potential matches with patient advocacy groups & foundations via thee customized ResearchMatch Volunteer Dashboard
Current Network Page
Concept Network Page
Concept Volunteer Dashboard
ACKNOWLEDGEMENTS
Our participating institutions & their tremendous liaisons• Arkansas Center for Clinical & Translational Research
• Atlanta Clinical and Translational Science Institute (Atlanta-CTSI)
• Boston University/Boston Medical Center (BU-Bridge)
• Colorado Clinical and Translational Sciences Institute
• CTSA at Case Western University
• CTSA at Weill Cornell Medical College
• Einstein-Montefiore Institute for Clinical and Translational Research
• Harvard Catalyst: The Harvard Clinical and Translational Science Center
• Indiana Clinical and Translational Sciences Institute
• Irving Institute for Clinical & Translational Research
• Johns Hopkins Institute for Clinical and Translational Research
• Mayo Center for Translational Science Activities
• Michigan Institute of Clinical and Health Research
• Mount Sinai Institutes of Clinical and Translational Sciences
• North and Central Texas Clinical and Translational Science Initiative
• NYU-HHC Clinical and Translational Science Institute
• Ohio State University Center for Clinical and Translational Science
• Oregon Clinical and Translational Research Institute
• Rockefeller University Center for Clinical and Translational Science
• Scripps Translational Science Institute
• South Carolina Clinical & Translational Research Institute
• Stanford Center for Clinical and Translational Education and Research
• Tufts Clinical and Translational Science Institute
• UAB Center for Clinical and Translational Science
• UC Davis Clinical and Translational Science Center
• UNC-CH North Carolina Translational and Clinical Sciences (TraCS) Institute
• University of Cincinnati Center for Clinical and Translational Science and Training
• University of Florida's Clinical and Translational Science Institute
• University of Illinois at Chicago Center for Clinical and Translational Science
• University of Iowa's Institute for Clinical and Translational Science
• University of Pennsylvania Institute for Translational Medicine and Therapeutics
• University of Rochester Clinical and Translational Science Institute
• University of Texas Health Science Center at San Antonio
• University of Texas Houston Center for Clinical and Translational Sciences
• University of Utah Center for Clinical and Translational Science
• University of Washington Institute of Translational Health Sciences
• University of Wisconsin - Madison Institute for Clinical and Translational Research
• UTMB Institute for Translational Sciences
• Vanderbilt Institute for Clinical and Translational Research
• Washington University Institute of Clinical and Translational Sciences
• Yale Center for Clinical Investigation
With utmost gratitude to our national „team‟
IRB, Counsel, Grants
& Contracts
Research Support
Services ColleaguesBiomedical Informatics
Developers
QUESTIONS/DISCUSSION
ADDITIONAL INFORMATION
www.researchmatch.org
Program Managers
Kirstin Scott, MPH
615-343-3715
Lara Brotheim, M.Ed
Thank you for your participation.