On October 21, 2017, the Celiac Disease Foundation (CDF) held a Patient Advocacy Program workshop at the University of Chicago Celiac Disease Center’s Annual Celiac Education Day.  Historically, medical research has not tapped the expertise of patients in the design and development of new treatments, often leading to disconnects between therapeutic outcomes and real patient needs. CDF’s Patient Advocacy Program seeks to address this disconnect by creating a national network of informed patients who understand the medical research process and who can engage with both the research and the patient communities to facilitate patient-centered outcomes in celiac disease research. Trained Patient Advocates are offered exclusive opportunities to participate in clinical trials and focus groups, and are solicited for research study feedback.

In Chicago, 50 patients and caregivers received training to become fully engaged participants and advocates. CDF’s Patient Advocacy Program has now been accessed by more than 600 participants across the United States either online or through in-person sessions.

CDF’s Patient Advocacy Program was developed through a two-year award received in 2015 from the Patient-Centered Outcomes Research Institute (PCORI). The session at the University of Chicago concludes the PCORI funding support of the Patient Advocacy Program. Thanks to the generosity of our donors, however, CDF will continue to offer the Patient Advocacy Program online and at the annual CDF National Conference each spring in Los Angeles, CA.

Click here to learn more about the CDF Patient Advocacy Program.

CDF Trains Patient Advocates in Celiac Disease Research at the University of Chicago