Enhancing diversity, equity, inclusion, and accessibility in eosinophilic gastrointestinal disease research: the consortium for eosinophilic gastrointestinal disease researchers' journey

Mirna Chehade¹, Glenn Furuta^{2

3}, Amy Klion⁴, J Pablo Abonia⁵, Seema Aceves⁶, Paroma Bose⁷, Margaret H Collins⁵, Carla Davis⁸, Evan S Dellon⁹, Grant Eickel¹⁰, Gary Falk¹¹, Sandeep Gupta⁷, Girish Hiremath¹², Amari Howard⁴, Elizabeth T Jensen¹³, Susamita Kesh⁵, Paneez Khoury⁴, Kendra Kocher^{2

3}, Ellyn Kodroff¹⁴, Shay Kyle¹⁴, NaDea Mak¹⁵, Dawn McCoy¹⁶, Pooja Mehta^{2

3}, Paul Menard-Katcher¹⁷, Vincent Mukkada⁵, Ally Paliana¹⁴, Marc Rothenberg⁵, Kathleen Sable¹⁶, Cara Schmitt¹⁶, Melissa Scott¹⁸, Jonathan Spergel¹⁵, Mary Jo Strobel¹⁶, Joshua B Wechsler¹⁹, Guang-Yu Yang²⁰, Amy Zicarelli¹⁸, Amanda B Muir¹⁵, Benjamin L Wright^{21

22}, Dominique D Bailey²³

Affiliations

¹ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1198, New York, NY 10029, USA.
² Digestive Health Institute, Section of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital of Colorado, Auroral, CO, USA.
³ Gastrointestinal Eosinophilic Disease Program, Mucosal Inflammation Program, University of Colorado School of Medicine, Aurora, CO, USA.
⁴ National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
⁵ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
⁶ University of California San Diego, Rady Children's Hospital of San Diego, San Diego, CA, USA.
⁷ Riley Hospital for Children, Indiana University, Indianapolis, IN, USA.
⁸ Baylor College of Medicine, Houston, TX, USA.
⁹ University of North Carolina School of Medicine, Chapel Hill, NC, USA.
¹⁰ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹¹ University of Pennsylvania, Philadelphia, PA, USA.
¹² Vanderbilt University Medical Center, Nashville, TN, USA.
¹³ Wake Forest University School of Medicine, Winston-Salem, NC, USA.
¹⁴ Campaign Urging Research for Eosinophilic Disease, Lincolnshire, IL, USA.
¹⁵ Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
¹⁶ American Partnership for Eosinophilic Disorders, Atlanta, GA, USA.
¹⁷ University of Colorado School of Medicine, Anchutz Medical Campus, Aurora, CO, USA.
¹⁸ Eosinophilic Family Coalition, Cincinnati, OH, USA.
¹⁹ Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
²⁰ Northwestern University, Evanston, IL, USA.
²¹ Division of Allergy, Asthma, and Clinical Immunology, Department of Medicine, Mayo Clinic Arizona, Scottsdale, AZ, USA.
²² Section of Allergy and Immunology, Division of Pulmonology, Phoenix Children's Hospital, Phoenix, AZ, USA.
²³ Columbia University Vagelos College of Physicians and Surgeons, New York-Presbyterian Morgan Stanley Children's Hospital, New York, NY, USA.

PMID: 37588777
PMCID: PMC10426297
DOI: 10.1177/26330040231180895

Review

Enhancing diversity, equity, inclusion, and accessibility in eosinophilic gastrointestinal disease research: the consortium for eosinophilic gastrointestinal disease researchers' journey

Mirna Chehade et al. Ther Adv Rare Dis. 2023.

. 2023 Aug 14:4:26330040231180895.

doi: 10.1177/26330040231180895. eCollection 2023 Jan-Dec.

Authors

Affiliations

¹ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1198, New York, NY 10029, USA.
² Digestive Health Institute, Section of Pediatric Gastroenterology, Hepatology and Nutrition, Children's Hospital of Colorado, Auroral, CO, USA.
³ Gastrointestinal Eosinophilic Disease Program, Mucosal Inflammation Program, University of Colorado School of Medicine, Aurora, CO, USA.
⁴ National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
⁵ Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
⁶ University of California San Diego, Rady Children's Hospital of San Diego, San Diego, CA, USA.
⁷ Riley Hospital for Children, Indiana University, Indianapolis, IN, USA.
⁸ Baylor College of Medicine, Houston, TX, USA.
⁹ University of North Carolina School of Medicine, Chapel Hill, NC, USA.
¹⁰ Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹¹ University of Pennsylvania, Philadelphia, PA, USA.
¹² Vanderbilt University Medical Center, Nashville, TN, USA.
¹³ Wake Forest University School of Medicine, Winston-Salem, NC, USA.
¹⁴ Campaign Urging Research for Eosinophilic Disease, Lincolnshire, IL, USA.
¹⁵ Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
¹⁶ American Partnership for Eosinophilic Disorders, Atlanta, GA, USA.
¹⁷ University of Colorado School of Medicine, Anchutz Medical Campus, Aurora, CO, USA.
¹⁸ Eosinophilic Family Coalition, Cincinnati, OH, USA.
¹⁹ Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
²⁰ Northwestern University, Evanston, IL, USA.
²¹ Division of Allergy, Asthma, and Clinical Immunology, Department of Medicine, Mayo Clinic Arizona, Scottsdale, AZ, USA.
²² Section of Allergy and Immunology, Division of Pulmonology, Phoenix Children's Hospital, Phoenix, AZ, USA.
²³ Columbia University Vagelos College of Physicians and Surgeons, New York-Presbyterian Morgan Stanley Children's Hospital, New York, NY, USA.

PMID: 37588777
PMCID: PMC10426297
DOI: 10.1177/26330040231180895

Abstract

In response to the social inequities that exist in health care, the NIH-funded Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) recently formed a diversity committee to examine systemic racism and implicit bias in the care and research of eosinophilic gastrointestinal diseases (EGIDs). Herein, we describe our process, highlighting milestones and issues addressed since the committee's inception, which we hope will inspire other researchers to enhance diversity, equity, inclusion, and accessibility (DEIA) in their fields. Our journey began by establishing mission and vision statements to define the purpose of the committee. Regular discussion of diversity-related topics was incorporated into existing meetings and web-based materials were shared. This was followed by educational initiatives, including establishing a library of relevant publications and a speaker series to address DEIA topics. We then established a research agenda focused on the following actionable items: (1) to define what is known about the demographics of EGIDs by systematic review of population-based studies; (2) to develop a practical tool for reporting participant demographics to reduce bias in EGID literature; (3) to examine health disparities in the care of individuals with eosinophilic esophagitis who present to the emergency department with an esophageal food impaction; (4) to examine how access to a gastroenterologist affects the conclusions of published research examining the prevalence of pediatric eosinophilic esophagitis; and (5) to develop a model for examining the dimensions of diversity, and provide a framework for CEGIR's ongoing projects and data capture. In addition to promoting consciousness of DEIA, this initiative has fostered inclusivity among CEGIR members and will continue to inspire positive changes in EGID care and research.

Keywords: diversity; eosinophilic esophagitis; eosinophilic gastrointestinal diseases; equity.

Plain language summary

Diversity in Eosinophilic Gastrointestinal Disease Research To address systemic bias in patient care and research in eosinophilic gastrointestinal diseases, the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) recently formed a diversity committee. The CEGIR diversity committee has defined its purpose through mission and vision statements and developed structured educational and research initiatives to enhance diversity, equity, inclusivity, and accessibility (DEIA) in all CEGIR activities. Here, we share the process of formation of our diversity committee, highlighting milestones achieved and summarizing future directions. We hope that this report will serve as a guide and an inspiration for other researchers to enhance DEIA in their fields.

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Conflict of interest statement

MC received consultant fees from Regeneron, Adare/Ellodi, AstraZeneca, Sanofi, Bristol Myers Squibb, Recludix Pharma, Allakos, Shire/Takeda, Phathom, and received research funding from Regeneron, Allakos, Shire/Takeda, AstraZeneca, Adare/Ellodi, Danone. GFuruta serves as CMO for EnteroTrack and received research funding from Arena/Pfizer, Holoclara, and NIH. JPA received payment or honoraria for lectures from Takeda Global Research and Development, participated on a Data Safety Monitoring Board for OctaPharma USA, Inc., and received grants or contracts from Cures Within Reach and Celgene. SA received consultant fees for Regeneron, AstraZeneca, Bristol Meyers Squibb, research funding from Implicit Biosciences, is co-inventor of oral viscous budesonide UCSD patent Takeda license, and received educational speaker fees from Sanofi/Genzyme, Regeneron. MHC received research funding from AstraZeneca, Ception, GlaxoSithKline, Meritage Pharma Inc., Receptos/Celgene/BMS, Regeneron Pharmaceuticals and Shire, a Takeda company, and is a consultant for Allakos, Arena Pharmaceuticals, AstraZeneca, Calypso Biotech, EsoCap Biotech, GlaxoSmithKline, Receptos/Celgene/BMS, Regeneron Pharmaceuticals, Robarts Clinical Trials Inc./Alimentiv, Inc. and Shire, a Takeda company. ESD received research funding from Adare/Ellodi, Allakos, Arena, AstraZeneca, GSK, Meritage, Miraca, Nutricia, Celgene/Receptos/BMS, Regeneron, Revolo, Shire/Takeda, consultant fees from Abbott, Abbvie, Adare/ Ellodi, Aimmune, Akesobio, Alfasigma, ALK, Allakos, Amgen, Aqilion, Arena/Pfizer, Aslan, AstraZeneca, Avir, Biorasi, Calypso, Celgene/Receptos/BMS, Celldex, Eli Lilly, EsoCap, Eupraxia, Ferring, GSK, Gossamer Bio, Holoclara, Invea, Landos, LucidDx, Morphic, Nexstone Immunology, Nutricia, Parexel/Calyx, Phathom, Regeneron, Revolo, Robarts/Alimentiv, Salix, Sanofi, Shire/Takeda, Target RWE, Upstream Bio, and educational grants from Allakos, Holoclara, Invea. GFalk received consultant fees for Adare/Ellodi, Allakos, Bristol Myers Squibb/Celgene, Lucid, Nexstone, Phathom, Regeneron/Sanofi, Shire/Takeda, Upstream Bio, and research support from Adare/Ellodi, Allakos, Arena/Pfizer, Bristol Myers Squibb/Celgene, Lucid, Nexteos, Regeneron/Sanofi, Shire/Takeda. SG is a Consultant/DSMB member/author for Adare, BMS, QOL, Takeda, MedScape, PVI, ViaSkin, and UpToDate, and received research support from Allakos, Ellodi, AstraZeneca. ETJ received consulting fees for Regeneron Pharmaceuticals and Jazz Pharmaceuticals. PK received funding from APFED. DM has received past honoraria from GSK for awareness activities unrelated to this publication and/or disease state. MR is a consultant for Pulm One, Spoon Guru, ClostraBio, Serpin Pharm, Allakos, Celldex, Nextstone One, Bristol Myers Squibb, Astra Zeneca, Ellodi Pharma, GlaxoSmith Kline, Regeneron/Sanofi, Revolo Biotherapeutics, and Guidepoint and has an equity interest in the first seven listed, and royalties from reslizumab (Teva Pharmaceuticals), PEESSv2 (Mapi Research Trust) and UpToDate. MR is an inventor of patents owned by Cincinnati Children’s Hospital. JS received grant support from Regeneron/Sanofi, Novartis, NIH, FARE, consulting fees from Regeneron, Sanofi, Alladapt, Readysetfood, ARS Pharmacy, and royalties from Uptodate. ABM received research funding from Morphic and served on medical advisory board for Bristol Myers Squib and Nextone Immunology. VM received consultant fees from Allakos, Regeneron, Sanofi, and Shire/Takeda, and served on an adjudication board for Alladapt. CD received research funding from DBV Technologies, Food Allergy Research and Education, Allergenis, Regeneron Pharmaceuticals, Pfizer, and consultant or advisory board fees for Aimmune Therapeutics. JBW has received consultant fees from Allakos, Ellodi, Regeneron, Sanofi/Genzyme, AstraZeneca, and Invea Therapeutics, and clinical trial/research funding from Allakos, Invea Therapeutics, and Sanofi-Regeneron. BLW, DDB, AK, GE, GH, KK, EK, SKyle, PM, PM-K, CS, MJS, G-YY, KS, NM, SKesh, PB, MS, AZ, AP, AH, and GF have no conflicts of interest to declare.

Figures

**Figure 1.**
Summary of CEGIR’s efforts to enhance DEIA in EGIDs. Source: Created with biorender.com. CEGIR, consortium of eosinophilic gastrointestinal disease researchers; DEIA, diversity, equity, inclusion, and accessibility; EGIDs, eosinophilic gastrointestinal diseases.

See this image and copyright information in PMC

References

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1. Bredenoord AJ, Patel K, Schoepfer AM, et al.. Disease burden and unmet need in eosinophilic esophagitis. Am J Gastroenterol 2022; 117: 1231–1241. - PubMed
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1. CEGIR. Diversity corner, https://www1.rarediseasesnetwork.org/cms/cegir/News-Spotlights-Events (2021, accessed 27 July 2022).

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Enhancing diversity, equity, inclusion, and accessibility in eosinophilic gastrointestinal disease research: the consortium for eosinophilic gastrointestinal disease researchers' journey

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Enhancing diversity, equity, inclusion, and accessibility in eosinophilic gastrointestinal disease research: the consortium for eosinophilic gastrointestinal disease researchers' journey

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