The Pioneers Recruitment Registry is available to all Kansas City area, Frontiers-affiliated researchers. We expect all investigators who use the Pioneers registry to inform their research participants about the specific study results, as a way to thank them for particpating in clinical research.
Studies listed on the Pioneers website must already have HSC/IRB approval and be actively recruiting participants.
In exchange for posting this study on the Pioneers website, principal investigators agree to:
Based on the abstract and eligibility information you provide, we will create a brief lay description of your study and inclusion/exclusion criteria. This description will be sent to you for approval prior to posting. Please complete the Active Study Listing Request survey to initiate the listing process.
Until the new Pioneers registry has a critical mass of people enrolled, the Frontiers registry is currently available to investigators from the University of Kansas. The numbers on the website main page reflect the number of people in the Frontiers registry system. Interested investigators should submit requests to the Data Review Committee (DRC). The DRC is comprised of Frontiers-affiliated faculty and staff who review registry requests and oversee the use of the registry database. The DRC will work with investigators as needed to ensure requests are appropriate and suitable. When the Pioneers registry is available to investigators, this form will be revised to allow investigators to select whether they would like to request names of potential participants from the Frontiers registry, the Pioneers registry, or both.
There is a growing recognition that traditional research approaches, while appropriate for many research questions, have failed to solve complex health disparities. Health problems exist within the context of people’s lives, and the explanations will likely be found in the messy complexity of real life. A community-engaged research approach can enable researchers to conduct research and produce results which may be directly translated to improve human health.
Community Partnership for Health (CPH) can help you find community partners with similar interests; establish a relationship with a community agency, institution, group of stakeholders, or practice-based research network; manage the steps of setting up a research project in community settings; and explore the degree of involvement with the community that would work best for your research.
Interested investigators should submit requests to CPH. After you submit a form, you'll hear back from a member of our team within a few days with next steps.
The Pioneers registry collects basic medical history from its volunteers and, when possible, also connects electronic medical records to participants. This data makes the Pioneers registry a powerful tool for researchers to efficiently target a participant population suitable to study needs.
Outreach efforts are made to Kansas City area residents at area medical centers and through community engagement efforts. Currently the Pioneers registry includes members of the Frontiers registry which comprises University of Kansas Medical Center clinic visitors who consented to be part of a searchable database of potential volunteers.
Researchers associated with partner institutions and organizations in Frontiers: The Heartland Institute for Clinical and Translational Research will have access to the Pioneers registry. Requests for access are reviewed on an individual basis.
Interested investigators should submit requests to the Data Review Committee (DRC). The DRC is comprised of University of Kansas officials who review registry requests. The DRC will work with investigators as needed to ensure requests are appropriate and suitable.
The Pioneers registry will actively seek participants from all parts of the metropolitan area, representing a wide range of medical backgrounds. Researchers and clinicians can help encourage individuals to sign up and increase the pool of potential participants.
Please consult with your IRB regarding any potential changes to your protocol.
The benefit of the Pioneers registry is access to participants’ basic medical history and background. Based on your study’s inclusion/exclusion criteria, you may be able to preliminarily identify a population for your research. While some volunteers opt to link their electronic medical record to their Pioneers registration, those who have answered only the included medical history questionnaire will have self-reported information.