Launched in February 2016, iCureCeliac® is a patient registry composed of people with celiac disease and gluten sensitivity 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.
iCureCeliac® was created by Celiac Disease Foundation in collaboration with the Genetic Alliance. iCureCeliac® is supported by the Patient Centered Outcomes Research Initiative (PCORI) and is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research.