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

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State: Public
Version: Final published version
License: CC BY-NC 4.0
Serval ID
serval:BIB_8D4402FE3953
Type
Article: article from journal or magazin.
Publication sub-type
Review (review): journal as complete as possible of one specific subject, written based on exhaustive analyses from published work.
Collection
Publications
Institution
Title
Creating a multi-center rare disease consortium - the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).
Journal
Translational science of rare diseases
Author(s)
Cheng K., Gupta S.K., Kantor S., Kuhl J.T., Aceves S.S., Bonis P.A., Capocelli K.E., Carpenter C., Chehade M., Collins M.H., Dellon E.S., Falk G.W., Gopal-Srivastava R., Gonsalves N., Hirano I., King E.C., Leung J., Krischer J.P., Mukkada V.A., Schoepfer A., Spergel J.M., Straumann A., Yang G.Y., Furuta G.T., Rothenberg M.E.
ISSN
2214-6490 (Print)
Publication state
Published
Issued date
18/12/2017
Peer-reviewed
Oui
Volume
2
Number
3-4
Pages
141-155
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
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
Pubmed
Open Access
Yes
Create date
27/01/2018 10:29
Last modification date
20/08/2019 15:51
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