An Open Letter to Our Medical and Research Community:
Celiac Disease Foundation was selected in December 2014 to participate in PCORnet, the national resource designed to harness the power of partnerships and health data to allow YOU to conduct clinical research faster, more efficiently, and less expensively than is possible now.
PCORnet is made up of Clinical Data Research Networks (CDRNs), which are based in large healthcare systems, and Patient-Powered Research Networks (PPRNs), which are built around patient and caregiver communities interested in particular conditions and populations.
The PPRN is a project of Genetic Alliance, and also includes the University of California, San Francisco, and the University of California, Davis along with technology partner, Private Access. Partner organizations have built surveys using common data elements and validated instruments where possible, and are especially interested in cross condition commonalities. The goal is to break down the silos of data that exist today to allow researchers to make broader connections between diseases.
As part of this, CDF was asked to develop an IRB-approved Unified Celiac Disease Patient Registry, which collects self-reported data on the determinants of a patient’s health along the celiac disease healthcare continuum. This patient-centric survey, focusing on what it’s like to live with celiac disease, is an avenue to engage more individuals in patient centered research. Registered patients will be available to you to ask additional questions and to solicit for participation in your studies and trials.
All celiac disease advocacy organizations will be able to link to the Registry from their own websites once the question set is finalized, in order to reach as many patients as possible. Celiac Support Association (CSA) is scheduled to come aboard once CDF has launched the finalized Registry to the patient community. It is our hope that others will join thereafter.
There are two sets of questions in the Registry – the Common Questions based upon PROMIS tools and common to all member organizations of the PPRN, and the Celiac Disease Specific Questions, drawn from previously validated tools and including specific questions as requested by the FDA. Please note that the “voice” of some of the questions was changed to be consistent with the voice of the PROMIS questions.
There is a 30 day period for our medical and research communities to review and comment upon the Celiac Disease Specific Questions. You may download the full question set spreadsheet and comment in Column A for the Celiac Questions. The Common Questons may not be modified. You may also create a login to view the patient experience.
DOWNLOAD the Question Set Spreadsheet to record your comments. To save, click ‘file’ and then ‘download as.’ The first tab is the Celiac Disease Specific Questions and the second tab is the Common Questions.
The celiac disease community is grateful for your valuable input. Please send your responses noted on the spreadsheet or via email to firstname.lastname@example.org by Friday, November 20, 2015.
Thank you in advance for your assistance,
Marilyn G. Geller, Chief Executive Officer