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PKD Research Participant Registry

PKD Research Participant Registry

The PKD Research Participant Registry is a registry of PKD patients willing to be contacted for clinical trials recruitment. Its purpose is to facilitate assessment of feasibility of trials, development of research protocols, and rapid start-up once a trial is activated. Patients who enroll in this registry volunteer to share their medical data and contact information and sign a HIPAA release allowing researchers to search their data according to specific inclusion and exclusion criteria and directly contact them for clinical trial recruitment. The PKD Research Participant Registry is effectively a subregistry of the Frontiers and Pioneers Research Participant Registries, which are resources developed for Frontiers: The Heartland Institute for
Clinical & Translational Research and funded by an NIH CTSA.

The Frontiers Registry includes KUMC patients who sign up at clinic visits and is linked to data in their electronic health records that is searchable in a deidentified manner. The Pioneers Registry includes members of the public who sign up on the Pioneers website. Please note that access to the Frontiers Research Participant Registry is currently restricted to KUMC faculty or those with a KUMC co-investigator, whereas the Pioneers Registry is available to all Kansas City area, Frontiers-affiliated researchers.

Researchers:

  • For instructions on how to search in HERON for participants and how to submit a request for their contact information, click here.
  • To visit the Pioneers website, click here
  • To submit a request to the Core for help using this resource, click here.

Patients:

  • To sign up for the PKD Research Participant Registry or to find out more, visit the Pioneers website.
    At this web site, patients interested in volunteering for research trials can register by filling out a short form, providing some details about contact information and medical history. By checking the box for "polycystic kidney disease (PKD)" in response to the question about the cause of your kidney disease, your name will automatically be entered into the PKD Research Participant Registry. If you fit the eligibility criteria for a clinical trial, a member of the study team may contact you by e-mail or telephone call. You will be given the opportunity to accept or decline to participate in the study. No one will be automatically enrolled in a trial.
  • To find out about clinical trials in PKD currently ongoing at KU please click here.

Last modified: Aug 13, 2018
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