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.

What is a study interest form?

A study interest form is an optional survey that may be attached to an active study listing, allowing potential participants to indicate interest in a specific study. A potential participant clicks the "I AM INTERESTED" button at the bottom of an active study listing to access the study interest form. The study team is immediately notified via email when a study interest form is completed.

  • The "basic" form allows individuals simply to indicate their interest in a particular study
  • The "customized" form allows study teams to add their own questions which can make it a more powerful screening tool for recruitment. 

Any potential participant who clicks "I AM INTERESTED" to complete a study interest form is required to create a Pioneers account and complete the Pioneers medical history survey. Basic study interest forms do not require HSC/IRB approval. Customized forms do require HSC/IRB approval; Pioneers can assist with this process. 

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. Complete the Active Study Listing Request form to initiate the listing process.

Investigators have options in how studies may be posted:

  • Active Study Listing (study summary)
    • pulled directly from www.clinicaltrials.gov, OR
    • edited into FAQ-format based on lay-friendly language provided on the Active Study Listing Request form
  • Study Interest Form - Optional additional survey that allows potential participants to signal interest in your study.

The Pioneers team will work with the study contact provided in the Active Study Listing Request form to finalize the listing and follow up as needed to maintain the listing. An active study listing on Pioneers does not require HSC/IRB approval. 

 

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. 

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.