Employing effective recruitment and retention strategies to engage a diverse pediatric population in genomics research.

Autor:	Ramos MA; Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Bonini KE; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Scarimbolo L; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Kelly NR; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Insel B; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Suckiel SA; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Brown K; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA; Illumina, Inc., Foster City, CA, USA., Di Biase M; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Gallagher KM; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Lopez J; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Aguiñiga KL; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Marathe PN; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Maria E; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Odgis JA; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Rodriguez JE; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Rodriguez MA; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Ruiz N; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Sebastin M; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Yelton NM; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Cunningham-Rundles C; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Gertner M; Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Laguerre I; Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai, New York, NY, USA., McDonald TV; Department of Medicine (Cardiology), Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., McGoldrick PE; Department of Pediatrics, Division of Child Neurology, New York Medical College, Valhalla, NY, USA; Pediatric Neurology, Boston Children's Health Physicians/Maria Fareri Children's Hospital, Hawthorne, NY, USA., Robinson M; Bethel Gospel Assembly, New York, NY, USA., Rubinstein A; Department of Allergy and Immunology, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Shulman LH; Department of Pediatrics, Division of Developmental Medicine, Rose F. Kennedy Children's Evaluation & Rehabilitation Center at Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Williams T; Midwifery Collective, Brooklyn, NY, USA., Wolf SM; Department of Pediatrics, Division of Child Neurology, New York Medical College, Valhalla, NY, USA; Pediatric Neurology, Boston Children's Health Physicians/Maria Fareri Children's Hospital, Hawthorne, NY, USA., Yozawitz EG; Isabelle Rapin Division of Child Neurology of the Saul R. Korey Department of Neurology at Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA; Department of Pediatrics, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Zinberg RE; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Obstetrics, Gynecology and Reproductive Science, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Abul-Husn NS; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA; 23andMe, Inc., Sunnyvale, CA, USA., Bauman LJ; Department of Pediatrics, Division of Ambulatory Pediatrics, Albert Einstein College of Medicine, Bronx, NY, USA., Diaz GA; Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Ferket BS; Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Institute for Healthcare Delivery Science, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Greally JM; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Jobanputra V; Molecular Diagnostics, New York Genome Center, New York, NY, USA; Department of Pathology and Cell Biology, Columbia University Medical Center, New York, NY, USA., Gelb BD; Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Mindich Child Health and Development Institute, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Kenny EE; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Wasserstein MP; Department of Pediatrics, Division of Pediatric Genetic Medicine, Children's Hospital at Montefiore/Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, NY, USA., Horowitz CR; Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Institute for Health Equity Research, Icahn School of Medicine at Mount Sinai, New York, NY, USA; Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA. Electronic address: carol.horowitz@mountsinai.org.
Jazyk:	angličtina
Zdroj:	American journal of human genetics [Am J Hum Genet] 2024 Nov 12. Date of Electronic Publication: 2024 Nov 12.
DOI:	10.1016/j.ajhg.2024.10.015
Abstrakt:	Underrepresentation in clinical genomics research limits the generalizability of findings and the benefits of scientific discoveries. We describe the impact of patient-centered, data-driven recruitment and retention strategies in a pediatric genome sequencing study. We collaborated with a stakeholder board, conducted formative research with adults whose children had undergone genomic testing, and piloted and revised study approaches and materials. Our approaches included racially, ethnically, and linguistically congruent study staff, relational interactions, study visit flexibility, and data-informed quality improvement. Of 1,656 eligible children, only 6.5% declined. Their parents/legal guardians were 76.9% non-White, 65.6% had public health insurance for the child, 49.9% lived below the federal poverty level, and 52.8% resided in a medically underserved area. Among those enrolled, 87.3% completed all study procedures. There were no sociodemographic differences between those who enrolled and declined or between those retained and lost to follow-up. We outline stakeholder-engaged approaches that may have led to the successful enrollment and retention of diverse families. These approaches may inform future research initiatives aiming to engage and retain underrepresented populations in genomics medicine research. Competing Interests: Declaration of interests N.S.A.-H. is an employee and equity holder of 23andMe and serves as a scientific advisory board member for Allelica. E.E.K. received personal fees from Illumina, 23andMe, Allelica, and Regeneron Pharmaceuticals, received research funding from Allelica, and serves as a scientific advisory board member for Encompass, Bio, Overtone, and Galateo Bio. K.B. is an employee and stockholder of Illumina, Inc. M.P.W. receives consulting fees from Sanofi Genzyme and research funding from Abeona, Alexion, Ara Parseghian Medical Research Foundation, BioMarin Pharmaceutical, Cure Sanfilippo Foundation, Dana’s Angels Research Trust, Firefly Fund, Mirium Pharma, Noah’s Hope/Hope4Bridget, Orchard Therapeutics, PassageBio, Sanofi Genzyme, Sio Gene Therapies, Takeda Pharmaceutical, Travere Therapeutics, and Ultragenyx Pharmaceutical. (Copyright © 2024 American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.)
Databáze:	MEDLINE
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