Creating a multi-center rare disease consortium - the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Katherine Cheng¹, Sandeep K Gupta², Susanna Kantor³, Jonathan T Kuhl⁴, Seema S Aceves⁵, Peter A Bonis⁶, Kelley E Capocelli⁷, Christina Carpenter⁸, Mirna Chehade⁹, Margaret H Collins¹⁰, Evan S Dellon¹¹, Gary W Falk¹², Rashmi Gopal-Srivastava¹³, Nirmala Gonsalves¹⁴, Ikuo Hirano¹⁵, Eileen C King¹⁶, John Leung¹⁷, Jeffrey P Krischer¹⁸, Vincent A Mukkada¹⁹, Alain Schoepfer²⁰, Jonathan M Spergel²¹, Alex Straumann²², Guang-Yu Yang²³, Glenn T Furuta^{24

25}, Marc E Rothenberg⁴

Affiliations

¹ Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
² Department of Pediatric Gastroenterology, Hepatology and Nutrition, University of Illinois College of Medicine, Peoria, IL, USA.
³ Department of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital Colorado, Denver, CO, USA.
⁴ Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁵ Division of Allergy and Immunology, Department of Pediatrics and Medicine, University of California San Diego, CA, USA.
⁶ Division of Gastroenterology, Tufts Medical Center, Boston, MA, USA.
⁷ Department of Pathology, Children's Hospital Colorado, Denver, CO, USA.
⁸ Health Informatics Institute, Rare Diseases Clinical Research Network, Tampa, FL, USA.
⁹ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁰ Division of Pathology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹¹ Department of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
¹² Division of Gastroenterology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
¹³ Office of Rare Diseases Research, National Center for Advancing Translational Sciences, National Institute of Health, Bethesda, MD, USA.
¹⁴ Division of Gastroenterology & Hepatology, Northwestern University The Feinberg School of Medicine, Chicago, IL, USA.
¹⁵ Division of Gastroenterology and Hepatology, Northwestern Medicine The Feinberg School of Medicine, Chicago, IL, USA.
¹⁶ Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹⁷ Department of Gastroenterology, Tufts Medical Center, Boston, MA, USA.
¹⁸ Departments of Pediatrics and Medicine, Health Informatics Institute, Morsani College of Medicine, University of South Florida, Tampa, FL, USA.
¹⁹ Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
²⁰ Department of Gastroenterology and Hepatology, University Hospital Lausanne/CHUV, Lausanne, Switzerland.
²¹ Department of Allergy and Immunology, Children's Hospital of Philadelphia, Perelman School of Medicine at University of Pennsylvania, Philadelphia, PA, USA.
²² Department of Gastroenterology and hepatology, University Hospital Zuerich, Switzerland.
²³ Department of Pathology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
²⁴ Gastrointestinal Eosinophilic Diseases Program, Children's Hospital Colorado, Aurora, CO, USA.
²⁵ Section of Gastroenterology, Hepatology, and Nutrition, Digestive Health Institute, University of Colorado School of Medicine, Aurora, CO, USA.

PMID: 29333363
PMCID: PMC5757645
DOI: 10.3233/TRD-170016

Creating a multi-center rare disease consortium - the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Katherine Cheng et al. Transl Sci Rare Dis. 2017.

. 2017 Dec 18;2(3-4):141-155.

doi: 10.3233/TRD-170016.

Authors

Affiliations

¹ Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, USA.
² Department of Pediatric Gastroenterology, Hepatology and Nutrition, University of Illinois College of Medicine, Peoria, IL, USA.
³ Department of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital Colorado, Denver, CO, USA.
⁴ Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁵ Division of Allergy and Immunology, Department of Pediatrics and Medicine, University of California San Diego, CA, USA.
⁶ Division of Gastroenterology, Tufts Medical Center, Boston, MA, USA.
⁷ Department of Pathology, Children's Hospital Colorado, Denver, CO, USA.
⁸ Health Informatics Institute, Rare Diseases Clinical Research Network, Tampa, FL, USA.
⁹ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁰ Division of Pathology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹¹ Department of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill School of Medicine, Chapel Hill, NC, USA.
¹² Division of Gastroenterology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
¹³ Office of Rare Diseases Research, National Center for Advancing Translational Sciences, National Institute of Health, Bethesda, MD, USA.
¹⁴ Division of Gastroenterology & Hepatology, Northwestern University The Feinberg School of Medicine, Chicago, IL, USA.
¹⁵ Division of Gastroenterology and Hepatology, Northwestern Medicine The Feinberg School of Medicine, Chicago, IL, USA.
¹⁶ Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹⁷ Department of Gastroenterology, Tufts Medical Center, Boston, MA, USA.
¹⁸ Departments of Pediatrics and Medicine, Health Informatics Institute, Morsani College of Medicine, University of South Florida, Tampa, FL, USA.
¹⁹ Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
²⁰ Department of Gastroenterology and Hepatology, University Hospital Lausanne/CHUV, Lausanne, Switzerland.
²¹ Department of Allergy and Immunology, Children's Hospital of Philadelphia, Perelman School of Medicine at University of Pennsylvania, Philadelphia, PA, USA.
²² Department of Gastroenterology and hepatology, University Hospital Zuerich, Switzerland.
²³ Department of Pathology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
²⁴ Gastrointestinal Eosinophilic Diseases Program, Children's Hospital Colorado, Aurora, CO, USA.
²⁵ Section of Gastroenterology, Hepatology, and Nutrition, Digestive Health Institute, University of Colorado School of Medicine, Aurora, CO, USA.

PMID: 29333363
PMCID: PMC5757645
DOI: 10.3233/TRD-170016

Abstract

Eosinophilic gastrointestinal disorders (EGIDs) affect various segments of the gastrointestinal tract. Since these disorders are rare, collaboration is essential to enroll subjects in clinical studies and study the broader population. The Rare Diseases Clinical Research Network (RDCRN), a program of the National Center for Advancing Translational Sciences (NCATS), funded the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) in 2014 to advance the field of EGIDs. CEGIR facilitates collaboration among various centers, subspecialties, patients, professional organizations and patient-advocacy groups and includes 14 clinical sites. It has successfully initiated two large multi-center clinical studies looking to refine EGID diagnoses and management. Several pilot studies are underway that focus on various aspects of EGIDs including novel therapeutic interventions, diagnostic and monitoring methods, and the role of the microbiome in pathogenesis. CEGIR currently nurtures five physician-scholars through a career training development program and has published more than 40 manuscripts since its inception. This review focuses on CEGIR's operating model and progress and how it facilitates a framework for exchange of ideas and stimulates research and innovation. This consortium provides a model for progress on other potential clinical areas.

Keywords: Eosinophilic diseases; collaborations; multicenter consortium; rare diseases.

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Figures

**Fig.2**
CEGIR Emblem: The C is in the shape of a nucleus of an eosinophil, which defines this group of disorders.

**Fig.4**
CEGIR members at recent meeting in Atlanta on March 2017.

**Fig.5**
Diverse biospecimens being collected and studied as part of CEGIR.

See this image and copyright information in PMC

References

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1. Batshaw M.L., Groft S.C. and Krischer J.P., Research into rare diseases of childhood, Jama 311(17) (2014), 1729–1730. - PMC - PubMed
1. Case C. et al., Diet and Stress in Pediatric Eosinophilic Esophagitis, J Pediatr Gastroenterol Nutr (2016). - PMC - PubMed
1. Chandramouleeswaran P.M. et al., Preferential secretion of thymic stromal lymphopoietin (TSLP) by Terminally differentiated esophageal epithelial cells: Relevance to eosinophilic esophagitis (EoE), PLoS One 11(3) (2016), e0150968. - PMC - PubMed
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Creating a multi-center rare disease consortium - the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Affiliations

Creating a multi-center rare disease consortium - the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

Authors

Affiliations

Abstract

Figures

References

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources