About iCureCeliac®: the Celiac Disease Patient-Powered Research Network
Launched in February 2016, iCureCeliac® is a patient registry composed of people with celiac disease and their caregivers who contribute health data, knowledge, and ideas to enable and accelerate research.
Data and insights contributed by iCureCeliac® participants under informed consent are available to researchers investigating topics important to people with celiac disease. Research topics can include treatments and outcomes, lifestyle and activities, quality of life, health care, biomarkers of celiac disease, and many other topics. Validated instruments include the Celiac Symptoms Index (CSI), Celiac Dietary Adherence Test (CDAT), Celiac Disease Quality of Life Measure (CD-QOL), SF-36, PROMIS Gastrointestinal, PROMIS 29 Profile and PROMIS Pediatric 25 Profile.
Launched as a Patient-Centered Outcomes Research Institute (PCORI)-funded project, iCureCeliac® was developed in collaboration with the the University of Southern California (USC), the Celiac Disease Foundation Medical Advisory Board, and other members of the celiac disease scientific and medical communities.