JOIN THE UNIFIED CELIAC DISEASE REGISTRY (UCDR) BETA TEST TEAM NOW THROUGH JANUARY 15, 2016
Be the first to share your skills to accelerate a cure for celiac disease. Contact [email protected] to request an invitation and receive a CDF Team Gluten-Free t-shirt for your feedback.
In keeping with our mission to advance research by leveraging technology, Celiac Disease Foundation is pleased to announce the launch of the Unified Celiac Disease Registry (UCDR). The UCDR allows users to report online the patient experience of living with celiac disease and other gluten-related disorders in order to further accelerate research into treatments and a cure. Data collected through the UCDR will be made available to the FDA and the research community starting in 2016.
By aggregating data from the profiles of thousands of people with celiac disease and other gluten-related disorders, the UCDR will provide much-needed insight into how celiac disease and gluten sensitivity impacts those affected. Patient registries for other chronic diseases have been credited with improving treatment by as much as 50% through helping researchers and clinicians discover critical patterns in treatments and outcomes.
“CDF is a strong proponent of patient-centered research,” says CDF CEO, Marilyn G. Geller. “Patients are the experts on their own disease. The UCDR allows them to share that expertise and shape research priorities into diagnosis strategies, new treatments, and a cure. We can also effect change at the FDA regarding stronger gluten-free labeling rules for all products containing gluten. We are proud to launch this valuable tool as a shared resource for the celiac disease community.”
The UCDR is an initiative of the Community Engaged Network for All (CENA), a Patient Centered Outcomes Research Institute (PCORI)-funded project, led by the Genetic Alliance, of which CDF is a member. The UCDR was developed in collaboration with the University of California, San Francisco (UCSF), the University of California, Davis (UCD), the University of California, Los Angeles (UCLA), the CDF Medical Advisory Board and scientific and medical communities, Private Access, and ten disease advocacy organizations that were selected by Genetic Alliance from more than 100 applicants.
The power to shape new treatments and a cure comes from all of us sharing our experiences. The success of the UCDR relies on the contributions of our entire community.
For more information contact [email protected].