2020
DOI: 10.1016/j.jaci.2019.11.012
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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, researc… Show more

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Cited by 19 publications
(6 citation statements)
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“…Medical organisations should work with patient support organisations such as the Eos Network in developing patient educational material (EosNetwork.org). Also the combination of medical and patient input into the direction of research, such as that of Consortium of Eosinophilic Gastrointestinal disease Researchers (CEGIR), 243 is a clear example of good practice in research. Due to the availability of global internet connectivity, there is value in ensuring that these organisations have a global perspective.…”
Section: Future Researchmentioning
confidence: 99%
“…Medical organisations should work with patient support organisations such as the Eos Network in developing patient educational material (EosNetwork.org). Also the combination of medical and patient input into the direction of research, such as that of Consortium of Eosinophilic Gastrointestinal disease Researchers (CEGIR), 243 is a clear example of good practice in research. Due to the availability of global internet connectivity, there is value in ensuring that these organisations have a global perspective.…”
Section: Future Researchmentioning
confidence: 99%
“…3,4 A recently reported histology scoring system for EoE evaluates features in addition to eosinophilic inflammation that correlate with symptoms, and can be used to determine remission; however, peak eosinophil count remains the gold standard for diagnosis. [5][6][7] By contrast, eosinophilic gastritis and duodenitis (EOG/EoD) present with a constellation of generally nonspecific symptoms (early satiety, nausea and vomiting, abdominal pain and cramping, bloating, and diarrhea) that overlap with other common GI conditions, such as functional dyspepsia or irritable bowel syndrome. This broad-based clinical presentation, together with low disease awareness, perceived rarity, and the frequent absence of significant endoscopic findings 8 make EGIDs an uncommon clinical suspicion.…”
mentioning
confidence: 99%
“…In addition to the optimised delivery of educational resources described above, patient advocacy groups will continue to be a critical resource for patients and their support network [ 37 , 39 , 40 ]. Coupled with these improvements in HCP and patient education, we recognise that there is also a need for wider public awareness about the prevalence and burden of EADs, especially with respect to their impacts on patient HRQoL.…”
Section: Charter Purposementioning
confidence: 99%