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The Frontiers/Pioneers Research Participant Registries are a systems for individuals to give permission to be contacted for future research studies for which they might be eligible. Qualified researchers with IRB-approved protocols can use these recruitment tools to obtain contact information for the individuals who match the criteria for their studies.
Requests for this contact information are made to the Data Request Committee (DRC), a multi-disciplinary committee with representation from the University of Kanas Medical Center, KU Hospital and the University of Kansas Physicians, Inc. The DRC screens for overutilization of population groups and individuals. Requests for identification of vulnerable populations are given special consideration.
Required documents for this application are: 1. IRB Approved Protocol 2. IRB Full Approval Notification Letter 3. IRB Approved and Date-stamped Consent Form(s) 4. Study team members 5. Frontiers Registry only: letters to particpant's primary care physician (see example template)
Frontiers Registry requests: You will also need to provide the name of the HERON i2b2 data set that meets your criteria. If you do not have access to HERON or need assistance in defining your data set, request HERON assistance.
Pioneers Registry requests: You will need to provide keywords that may be searched in the Pioneers health survey responses.
You will be notified by email of the receipt of your application. If you have any questions, contact Barb Shull at 913-945-7586 or firstname.lastname@example.org
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