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 are 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:

• Instructions on how to search in HERON for participants and how to submit a request for their contact information.

Patients:

• To sign up for the PKD Research Participant Registry or to find out more, contact Zhuo Tang: email: ztang2@kumc.edu, 913-588-3985.
• View the active clinical trials in PKD at KU.