FAQs for Researchers

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.

How can I have my study added to the Active Studies list?

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:

  1. notify the Pioneers administrative team (pioneersresearch@kumc.edu) when active recruitment for the listed study has been completed
  2. provide the Pioneers administrative team with data concerning the number and percent of participants recruited through the Pioneers Registry 
  3. provide all study participants with final study results when they are available
  4. send the Pioneers administrative team the summary you sent to participants
  5. cite the Frontiers CTSA (creator of Pioneers): "This work was supported in part by a CTSA grant from NCATS awarded to the University of Kansas Medical Center for Frontiers: The Heartland Institute for Clinical and Translational Research #UL1TR000001. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the NIH or NCATS."

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.

How do I get started in accessing the registry?

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 contact Pioneers via email for instructions on how to get started.

All requests are reviewed by 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. 

How can I learn more about community-engaged research?

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.

How does the Pioneers registry differ from other patient registries?

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.

How does the Pioneers registry recruit people to sign up?

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.

Am I eligible to access the Pioneers registry?

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. 

How do I get started in accessing the registry?

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.

What kinds of participants will I find?

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.

What do I need to communicate to my Institutional Review Board (IRB) if I want to use the Pioneers registry?

Please consult with your IRB regarding any potential changes to your protocol.

Can I find participants with the background necessary to my study?

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.