Building and implementing a research infrastructure for eosinophilic gastrointestinal diseases

Funding

As much of research (thinking, planning, and meeting) is not fully funded, financial and institutional resources are needed to support the research as a whole. We have received funding from several different sources; the government (the NIH, FDA, and Swiss National Science Foundation), academic societies, patient advocacy groups, industry, philanthropic organizations, and academic institutions (the Cincinnati Children\u2019s Hospital Medical Center, Children\u2019s Hospital Colorado, and University of Colorado School of Medicine) have provided research support and infrastructure. In 2008, Dave and Denise Bunning were generous supporters of TIGERS, and their efforts fueled early EGID research efforts. Their support, as well as that from the patient advocacy groups Campaign Urging Research for Eosinophilic Diseases and the American Partnership for Eosinophilic Disorders, academic societies (NASGPHAN), and industry, allowed us to receive NIH funding (the National Center for Advancing Translational Sciences, National Institute of Allergy and Infectious Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, the Rare Disease Clinical Research Network) for CEGIR. We thank our patients for their insights and engagement; our CEGIR, TIGERS, and research colleagues across the world for their collaboration; Shawna Hottinger for her excellent editorial assistance; and our families for their unwavering patience and support. The CEGIR (grant U54 AI117804) is part of the Rare Disease Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research, National Center for Advancing Translational Sciences (NCATS), and is funded through collaboration between National Institute of Allergy and Infectious Diseases (NIAID), National Institute of Diabetes and Digestive and Kidney Diseases, NCATS, and (in part) by the Division of Intramural Research, NIAID/NIH. CEGIR is also supported by patient advocacy groups, including the American Partnership for Eosinophilic Disorders, Campaign Urging Research for Eosinophilic Diseases, and Eosinophilic Family Coalition. As a member of the RDCRN, CEGIR is also supported by its data management and coordinating center (DMCC) (grant U2CTR002818). Funding support for the DMCC is provided by the NCATS and the National Institute of Neurological Disorders and Stroke. In 2006, an unfunded grassroots group of like-minded enthusiastic specialists pioneered the first diagnostic criteria during teleconferences. The International Gastrointestinal Eosinophilic Disease Researchers (TIGERS) was formed and supported by an NIH R13 grant and the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) in the first single-topic symposium. At this meeting, EoE diagnostic criteria were finalized; these criteria were published in 2007 in the American Gastroenterological Association\u2019s flagship journal, Gastroenterology. 7 Since then, the NASPGHAN, the American Gastroenterological Association, the American College of Gastroenterology, and the American Academy of Allergy, Asthma & Immunology have been partners in publications, educational programs, research studies, and meetings. In fact, the NASPGHAN will host the second single-topic symposium, which will be focused on EGID, on November 6, 2024. ( naspghan.org ). Partnerships with the NIH and FDA have allowed for meaningful discussions that promote, facilitate, and more rapidly address key issues surrounding patients\u2019 care and concerns. 8