Abstract
Recent advances in rare disease research are accelerated by the work of consortia that have been supported by the National Institutes of Health. Development of such consortia rely on multidisciplinary relationships and engagement with patient advocacy groups, as well as the National Institutes of Health and industry and academic partners. In this rostrum we present the development of such a process that focuses on eosinophilic gastrointestinal diseases. Principal investigators, patient advocacy groups, research assistants, and trainees work together to perform natural history studies that promote clinical trial readiness tools, conduct clinical trials, train a new generation of investigators, and perform innovative pilot studies.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 28-37 |
| Number of pages | 10 |
| Journal | Journal of Allergy and Clinical Immunology |
| Volume | 145 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 2020 |
Funding
Supported by the Consortium for Eosinophilic Gastrointestinal Diseases Researchers (CEGIR; U54 AI117804). CEGIR is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), and is funded through collaboration between the National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and NCATS. CEGIR is also supported by patient advocacy groups, including the American Partnership for Eosinophilic Disorders (APFED), Campaign Urging Research for Eosinophilic Diseases (CURED), and Eosinophilic Family Coalition (EFC). G.T.F. is also supported by the LaCache Chair in Gastrointestinal Allergic and Immunologic Diseases Chair of Pediatrics.
Keywords
- Eosinophils
- advocacy
- allergy
- consortium
- esophagitis
- gastrointestinal
ASJC Scopus subject areas
- Immunology and Allergy
- Immunology
