In keeping with our mission to advance research by leveraging technology, Celiac Disease Foundation is pleased to announce the February launch of iCureCeliac, a patient-powered research network (PPRN). At iCureCeliac, people living with celiac disease and gluten sensitivity can help facilitate new treatments and a cure by safely and securely contributing their health information online. Patients will also be able to submit ideas for research on topics important to them. Data collected through iCureCeliac will be made available to the FDA and the research community.
By aggregating data from the profiles of thousands of people with celiac disease and other gluten-related disorders, iCureCeliac 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. iCureCeliac 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.”
iCureCeliac 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. iCureCeliac 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 iCureCeliac relies on the contributions of our entire community.
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