Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership

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Main Authors: Karmen Trzupek, Ravi Bhargava, Cynthia Kuan, Fanny Sie, Vanessa Vogel-Farley, Katelyn Hobbs, Verena Chung, Maria Diaz, Charlene Son-Rigby, Joseph Geraci, Jacob Albrecht
Format: Article
Language:English
Published: Elsevier 2025-07-01
Series:HGG Advances
Online Access:http://www.sciencedirect.com/science/article/pii/S266624772500065X
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author Karmen Trzupek
Ravi Bhargava
Cynthia Kuan
Fanny Sie
Vanessa Vogel-Farley
Katelyn Hobbs
Verena Chung
Maria Diaz
Charlene Son-Rigby
Joseph Geraci
Jacob Albrecht
author_facet Karmen Trzupek
Ravi Bhargava
Cynthia Kuan
Fanny Sie
Vanessa Vogel-Farley
Katelyn Hobbs
Verena Chung
Maria Diaz
Charlene Son-Rigby
Joseph Geraci
Jacob Albrecht
author_sort Karmen Trzupek
collection DOAJ
format Article
id doaj-art-4d3cf06ab48e49d9bbd0f08b0d1d1a87
institution DOAJ
issn 2666-2477
language English
publishDate 2025-07-01
publisher Elsevier
record_format Article
series HGG Advances
spelling doaj-art-4d3cf06ab48e49d9bbd0f08b0d1d1a872025-08-20T03:21:52ZengElsevierHGG Advances2666-24772025-07-016310046210.1016/j.xhgg.2025.100462Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnershipKarmen Trzupek0Ravi Bhargava1Cynthia Kuan2Fanny Sie3Vanessa Vogel-Farley4Katelyn Hobbs5Verena Chung6Maria Diaz7Charlene Son-Rigby8Joseph Geraci9Jacob Albrecht10Global Genes, 1012 14th Street NW, Washington, DC 20005, USA; Corresponding authorF. Hoffman-La Roche, 7070 Mississauga Rd, Mississauga, ON L5N 5M8, CanadaGlobal Genes, 1012 14th Street NW, Washington, DC 20005, USAF. Hoffman-La Roche, 7070 Mississauga Rd, Mississauga, ON L5N 5M8, CanadaGlobal Genes, 1012 14th Street NW, Washington, DC 20005, USA; Rare Epilepsy Network (REN), 12042 Cedar Creek Rd, Cedarburg, WI 53012, USAGlobal Genes, 1012 14th Street NW, Washington, DC 20005, USADreamChallenges, Sage Bionetworks, 2901 Third Ave. Suite 330, Seattle, WA 98121, USADreamChallenges, Sage Bionetworks, 2901 Third Ave. Suite 330, Seattle, WA 98121, USAGlobal Genes, 1012 14th Street NW, Washington, DC 20005, USANetraMark, 1655 Dupont St Suite #101, Toronto, ON M6P 3T1, CanadaBristol Myers Squibb, 3401 Princeton Pike, Lawrence, NJ 08648, USAhttp://www.sciencedirect.com/science/article/pii/S266624772500065X
spellingShingle Karmen Trzupek
Ravi Bhargava
Cynthia Kuan
Fanny Sie
Vanessa Vogel-Farley
Katelyn Hobbs
Verena Chung
Maria Diaz
Charlene Son-Rigby
Joseph Geraci
Jacob Albrecht
Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
HGG Advances
title Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
title_full Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
title_fullStr Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
title_full_unstemmed Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
title_short Breaking barriers in rare disease research: The RARE-X Open Science Data Challenge as a model for collaborative innovation and community partnership
title_sort breaking barriers in rare disease research the rare x open science data challenge as a model for collaborative innovation and community partnership
url http://www.sciencedirect.com/science/article/pii/S266624772500065X
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