Problem: Researchers don't have all the information they need to find therapeutic treatments and a cure.
Solution: We accelerate research by engaging with patients and connecting them to researchers.
Beyond Celiac represents as many as 21 million individuals suffering from gluten-related disorders through our robust website www.BeyondCeliac.org (with 2.5 million unique visitors annually) and expansive social media platforms (nearly 150,000 followers on Facebook, Twitter, Instagram and Pinterest). We have successfully recruited over 5,000 patients for our own research (in collaboration with hospital centers) and for multiple clinical trials.
Beyond Celiac has developed a unique approach to patient recruitment, based on a comprehensive education and engagement framework that emphasizes the important role that patients play in research and demonstrates this importance by directly connecting them with opportunities to advance the field. Through a consistent and long-term relationship, Beyond Celiac recruited the largest number of referrals out of all tactics and partnerships for a major celiac disease clinical trial nationally.
In 2015, Beyond Celiac launched its first Research Summit, a first step in building an online tool to collect information about patients' experiences before, during and after diagnosis over a long-term period. We will share this information directly with researchers, helping to contribute towards a more patient-centered research agenda.
We keep the community updated on the latest in celiac disease research and opportunities to get involved through our Research Opt-In, which grows each day.