The Celiac Disease Foundation is committed to ensuring the patient perspective is represented in celiac disease research. Through our iCureCeliac® patient registry and Patient Advocate Program, we encourage patients to engage in the research process to help shape the future of celiac disease research toward better diagnostics, treatments, and a cure.
On September 20-21, 2018, Celiac Disease Foundation Research and Advocacy Manager, Julia McBeth, joined fellow members of organizations leading community-initiated research at the Genetic Alliance People-Driven Research Meeting in Washington, D.C.
Genetic Alliance is the world’s largest nonprofit health advocacy organization network. The Celiac Disease Foundation is a member of Genetic Alliance’s network of more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations that share the common platform to improve health outcomes for individuals with genetic disease.
The People-Driven Research Meeting gathered representatives from organizations across the U.S. to evaluate the strengths of current approaches being used in community-led research, in addition to exploring methods to overcome shared challenges. The main objectives of the two-day meeting included: 1) articulating the key components of people-driven research, 2) reviewing established methods and measures, 3) identifying gaps in evidence and best practices, 4) demonstrating existing tools and infrastructure, and 5) envisioning a roadmap to scale impactful people-driven research.
Julia collaborated with meeting attendees to exchange ideas and solutions pertaining to topics such as identifying the key factors in bridging the credibility gap between researchers and patients/advocacy groups, understanding the barriers to care and how they affect research participation, and defining the key pillars of people-driven research. The meeting generated many impactful, practical concepts and strategies to continue the advancement of successful patient-driven research.
Learn more about how you can get involved in celiac disease research by joining our iCureCeliac® patient registry, becoming a Patient Advocate, and visiting our Current Trials page to find celiac disease clinical trials and studies enrolling participants now.
Celiac Disease Foundation Attends Genetic Alliance People-Driven Research Meeting