Analysis of Unmet Needs of Individuals Affected by Eosinophilic Gastrointestinal Disorders: Towards Health Promotion and Effective Care

Hiremath, Girish; Kodroff, Ellyn; Strobel, Mary Jo; Scott, Melissa; Book, Wendy; Reidy, Cathy; Kyle, Shay; Mack, Denise; Sable, Kathleen; Abonia, Pablo; Spergel, Jonathan; Gupta, Sandeep K.; Furuta, Glenn T.; Rothenberg, Marc E.; Dellon, Evan S.

doi:10.1016/s0016-5085(17)32933-5

Cited by 2 publications

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“…The healthcare system related issues include only a few specialized centers focused on EGIDs [27,28], identifying an adult provider(s) to whom the care can be transferred, wait-time to establish care [29,30], and the barriers associated with the lack of compatible medical record systems or with disjointed health systems wherein prior testing, results, and data are not readily available for review by the adult providers.…”

Section: Existing Barriers and Opportunitiesmentioning

confidence: 99%

Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities

Hiremath

Chapa-Rodríguez

Katzka

et al. 2022

TRD

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Eosinophilic gastrointestinal disorders (EGID) are a group of allergen-mediated conditions which are characterized by eosinophilic inflammation affecting one or more parts of the gastrointestinal tract. A disproportionately higher number of EGID patients are diagnosed in the pediatric age group. Given the chronic course of EGIDs and lack of curative therapies at this time, majority of the pediatric EGID patients may require continued care well into their adulthood. However, to date, scant data are available regarding the health care transition (HCT), the transition of care (TC), and the effectiveness of transfer of care EGID patients from pediatric-oriented to adult-oriented providers. Herein, we review the lessons learnt from transfer of care of children with other chronic gastrointestinal and allergic conditions, analyze the current knowledge, potential barriers, the role of various stakeholders in successful transfer of care of EGID patients, propose a conceptual framework for HCT and TC of EGID patients, and identify outcome measures to ensure the quality of progression of care.

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Section: Existing Barriers and Opportunitiesmentioning

confidence: 99%

Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities

Hiremath

Chapa-Rodríguez

Katzka

et al. 2022

TRD

Self Cite

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

Cheng

Gupta

Kantor

et al. 2017

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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.

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Analysis of Unmet Needs of Individuals Affected by Eosinophilic Gastrointestinal Disorders: Towards Health Promotion and Effective Care

Cited by 2 publications

References 0 publications

Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities

Transition of care of patients with eosinophilic gastrointestinal diseases: Challenges and opportunities

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

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