• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Contact registry launches for eosinophilic gastrointestinal diseases

DustyKat

Super Moderator
The Consortium of Eosinophilic Gastrointestinal Disease Researchers announced the launch of a new patient contact registry for eosinophilic gastrointestinal diseases, or EGIDs, according to a press release.

Eosinophilic gastrointestinal diseases are rare chronic inflammatory conditions believed to be triggered by food-related allergic hypersensitivity, according to the release.

“This registry will transform our ability to develop the best diagnostics and treatments for EGIDs by improving the way in which patients with EGID and their families can contribute and be involved in the efforts to understand these diseases,” Marc Rothenberg, MD, PhD, director of allergy and immunology and the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s Hospital Medical Center, said in the press release. “As physicians and researchers, we are only a part of the EGID community. This registry will bring us together with others to collectively take the next big leaps forward.”

The registry intends to provide a single international database for patient- and family-submitted data in order to help CEGIR researchers recruit participants for new EGID studies, the release said. Patients and caregivers will receive notification of research studies for which they may be eligible as well as research updates, patient advocacy information and other opportunities to contribute to EGID researcher training.

According to Rothenberg, “The research consortium and new patient registry are significant developments for the EGID community and offer patients the unprecedented opportunity to participate in the research process.”
Source:
http://www.healio.com/gastroenterology/esophagus/news/online/%7B12eee3ee-144f-43b8-9da9-1a4b49b43d95%7D/contact-registry-launches-for-eosinophilic-gastrointestinal-diseases
 
Last edited:

David

Co-Founder
Location
Naples, Florida
I wonder if it's as rare as they think or more along the lines of not diagnosed very often. I suspect a lot of IBS out there would fall under the EGID umbrella. Nothing to base that on of course, just a hunch.
 
Top