Frontiers and Pioneers Participant Registries Requests

The Frontiers and Pioneers Research Participant Registries include patients who have given permission to be contacted for future research studies. Frontiers patients have all been seen at KU Hospital, whereas Pioneers patients are those in the community who may or may not have been seen at KU Hospital.Qualified researchers with IRB-approved protocols can use these recruitment tools to obtain contact information for individuals who match the criteria for their studies.

Requesting Patient Contact Information:

Requests for contact information are made to the Recruitment Registry Review Committee (RRRC), a multi-disciplinary committee with representation from the University of Kanas Medical Center, KU Hospital and the University of Kansas Physicians, Inc. The RRRC screens for overutilization of population groups and individuals. Requests for identification of vulnerable populations are given special consideration.

The RRRC meets on the second Monday of the month. Requests for review must be submitted by the Monday of the previous week. To obtain this contact information, complete the application to the Recruitment Registry Review Committee (RRRC).

Documents required upon submission to the RRRC include:

  1. IRB Approved Protocol
  2. IRB Full Approval Notification Letter
  3. IRB Approved and Date-stamped Consent Form(s)
  4. Frontiers Registry only: letter to participant's primary care physcian (see example template).

Once approved, you will receive an approval notification and contact information will be sent separately in a password protected file through Secure File Transfer.  The file will be available for 30 days. It is recommended that you remind patients that they signed an authorization form in one of the outpatient clinics giving permission to be contacted in the future about research and that is why they are now being called.

An updated database search can be conducted every 3 months, if requested.  Please contact Barb Shull for more information.

Please note that the Frontiers Research Participant Registry is available to KUMC faculty or those with a KUMC co-investigator.

How to search HERON for Frontiers participants

  • Start the i2b2 Query & Analysis Tool. Conduct desired query. For general help on how to conduct a search, click on the "Help" link located in the upper, right portion of the i2b2 Query & Analysis Tool.
  • Add Frontiers Research Participant Registry to a group and exclude Deceased in another group by clicking on the exclude link.  This will limit the search to only non-deceased participants in HERON who have consented to be part of the registry.
  • Enter a search name of your choice, and make sure to check the “patient list” checkbox. Always give an appropriate name for future reference to the query and store it in your folder (it has your name)  in the Workplace area.  Move the query to the shared folder when ready to submit request to the DRC.
  • Complete Frontiers Research Participant Registry form.

Pioneers Website:

  • Members of the community may register and consent to become a Pioneer. 
  • KUMC studies posted on clinicaltrials.gov are automatically posted on the website under Active Studies 
  • Researchers can complete this form to request to post a study on the website 
  • Researchers can request a basic study interest form to be added to the study lising
    • A button "I am Interested" will be shown on the study page. If patients click that they are interested, researchers will be given their contact information.
    • Fill out this form 

Research Recruitment Video: 

 


Questions?
Contact the clinical informatics coordinator via the feedback form or call x8-7688