Advancing patient care through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

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.

Keywords: Eosinophils; advocacy; allergy; consortium; esophagitis; gastrointestinal.

Figure 1.. Organizational Overview of CEGIR

Legend-The Rare Diseases Clinical Research Network [RDCRN, comprising the Rare Diseases Clinical Research Consortia (RDCRCs), RDCRC Steering Committee, and Data Management Coordinating Center (DMCC)], CEGIR Administrative Core, CEGIR Internal Steering Committee, and CEGIR External Advisory Committee (EAC) provide oversight of CEGIR. Vertical lines represent direct reporting; horizontal and diagonal lines represent collaboration or direct reporting. The CEGIR PI and Director is Marc Rothenberg, MD, PhD and the CEGIR Clinical Team Liaison is Glenn T. Furuta, MD. The CEGIR Pathology Core members are as follows, with italics indicating leadership: Margaret Collins, MD, Nicoletta Arva, MD, PhD, and Guang-Yu Yang, MD. The CEGIR Biostatistics and Informatics Core members are as follows, with italics indicating leadership: Lisa Martin, PhD, Elizabeth Jensen, MPH, PhD, and Zhaoxing Pan, PhD. The Site Abbreviations are as follows: ACH, Arkansas Children’s Hospital; BCM, Baylor College of Medicine; CCHMC, Cincinnati Children ‘s Hospital Medical Center; CHCO, Children’s Hospital Colorado; CHOP, Children’s Hospital of Philadelphia; CUSOM, Colorado University School of Medicine; Lurie Children’s, Lurie Children’s Hospital of Chicago; Mt. Sinai, Icahn School of Medicine at Mount Sinai; Northwestern, Northwestern University; NIH, National Institutes of Health; Tufts, Tufts Medical Center; UCSD, University of California, San Diego; UI-Peoria, University of Illinois College of Medicine at Peoria; UNC, University of North Carolina; UPenn, University of Pennsylvania; UU, University of Utah; Vanderbilt, Vanderbilt University. The Site Investigators are as follows, with italics designating CEGIR Site Leaders: ACH, Robert Pesek, MD; BCM, Carla McGuire Davis, MD and Anthony Olive, MD; CCHMC, Marc Rothenberg, MD, PhD, Vince Mukkada, MD, J. Pablo Abonia, MD, Philip Putnam, MD, and Ting Wen, MD, PhD; CHCO, Glenn T. Furuta, MD, Dan Atkins, MD, and Calies Menard-Katcher, MD; CHOP, Jonathan Spergel, MD and Amanda Muir, MD; CUSOM, Paul Menard-Katcher, MD; Lurie Children’s, Joshua Wechsler, MD, Barry Wershil, MD, and Amir Kagalwalla, MD; Mt. Sinai, Mirna Chehade, MD; Northwestern, Ikuo Hirano, MD and Nirmala Gonsalves, MD; NIH, Amy Klion, MD and Pannez Khoury, MD; Tufts, John Leung, MD and Peter Bonis, MD; UCSD, Seema Aceves, MD, PhD; UI-Peoria, Sandeep Gupta, MD; UNC, Evan Dellon, MD; UPenn, Gary Falk, MD; UU, Kathryn Peterson, MD; Vanderbilt, Girish Hiremath, MPH, MD. PAG, patient advocacy group.