{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T01:10:17Z","timestamp":1777857017421,"version":"3.51.4"},"reference-count":10,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2021,11,2]],"date-time":"2021-11-02T00:00:00Z","timestamp":1635811200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JND"],"published-print":{"date-parts":[[2021,11,2]]},"abstract":"<jats:p>Background: For patients with rare diseases such as Duchenne and Becker muscular dystrophy (DMD\/BMD), access to their health data is key to being able to advocate for themselves and be in control of their care. Since 2018, the DMD\/BMD patient community has been committed to making DMD\/BMD-related data FAIR, i.e., Findable, Accessible, Interoperable, and Reusable. On March 3, 2021, the second international meeting on FAIR data sharing for DMD\/BMD was held virtually. Objective: The aim of this meeting report is to summarize the presentations and discussions of the meeting. Methods: During this meeting, the progress of FAIRification efforts since the first international meeting in 2019, new developments, stakeholder perspectives, and experiences from implementing FAIR data principles in practice were presented and discussed. Results: Over 120 attendees representing various stakeholder groups (ie, patient organizations, clinicians, clinical and academic researchers, pharmaceutical companies, regulators, and EU organizations) from 22 countries participated in the meeting. This meeting report summarizes the presentations and discussions from the meeting, provides an overview of the key lessons learned since the first meeting, and outlines the next steps. Conclusions: Patient organizations are key drivers of the FAIRification process in practice and dialogue with stakeholders is critical to success.<\/jats:p>","DOI":"10.3233\/jnd-210721","type":"journal-article","created":{"date-parts":[[2021,7,30]],"date-time":"2021-07-30T10:56:05Z","timestamp":1627642565000},"page":"1097-1108","source":"Crossref","is-referenced-by-count":16,"title":["How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care: A Report of the Virtual Second International Meeting on Duchenne Data Sharing, March 3, 2021"],"prefix":"10.1177","volume":"8","author":[{"given":"Nawel","family":"van Lin","sequence":"first","affiliation":[{"name":"Duchenne Parent Project, Veenendaal, The Netherlands"},{"name":"Center for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Georgios","family":"Paliouras","sequence":"additional","affiliation":[{"name":"Duchenne Data Foundation, Veenendaal, The Netherlands"},{"name":"National Centre for Scientific Research, \u201cDemokritos\u201d, Agia Paraskevi, Greece"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth","family":"Vroom","sequence":"additional","affiliation":[{"name":"Duchenne Parent Project, Veenendaal, The Netherlands"},{"name":"World Duchenne Organization UPPMD, Veenendaal, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter A.C.","family":"\u2019t Hoen","sequence":"additional","affiliation":[{"name":"Center for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marco","family":"Roos","sequence":"additional","affiliation":[{"name":"Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"key":"10.3233\/JND-210721_ref1","doi-asserted-by":"publisher","DOI":"10.1038\/sdata.2016.18"},{"issue":"1-2","key":"10.3233\/JND-210721_ref2","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1162\/dint_a_00027","article-title":"The \u201cA\u201d of FAIR \u2013as open as possible, as closed as necessary","volume":"2","author":"Landi","year":"2020","journal-title":"Data Intelligence"},{"issue":"1-2","key":"10.3233\/JND-210721_ref3","doi-asserted-by":"publisher","first-page":"66","DOI":"10.1162\/dint_a_00029","article-title":"Ontology-based access control for FAIR data","volume":"2","author":"Brewster","year":"2020","journal-title":"Data Intelligence"},{"issue":"10","key":"10.3233\/JND-210721_ref6","doi-asserted-by":"publisher","first-page":"800","DOI":"10.1016\/j.nmd.2019.08.010","article-title":"Meeting on data sharing for Duchenne 21\u201322 March Amsterdam, the Netherlands","volume":"29","author":"Verhaart","year":"2019","journal-title":"Neuromuscular Disorders"},{"issue":"1-2","key":"10.3233\/JND-210721_ref16","doi-asserted-by":"publisher","first-page":"96","DOI":"10.1162\/dint_a_00032","article-title":"Distributed analytics on sensitive medical data: The personal health train","volume":"2","author":"Beyan","year":"2020","journal-title":"Data Intelligence"},{"key":"10.3233\/JND-210721_ref20","doi-asserted-by":"publisher","DOI":"10.3233\/SHTI200085"},{"key":"10.3233\/JND-210721_ref21","doi-asserted-by":"publisher","DOI":"10.1101\/2021.03.04.21250752"},{"key":"10.3233\/JND-210721_ref22","doi-asserted-by":"publisher","DOI":"10.1101\/2020.12.12.20245951"},{"issue":"1-2","key":"10.3233\/JND-210721_ref25","doi-asserted-by":"publisher","first-page":"56","DOI":"10.1162\/DINT_A_00028","article-title":"A generic workflow for the data FAIRification process","volume":"2","author":"Jacobsen","year":"2020","journal-title":"Data Intelligence"},{"key":"10.3233\/JND-210721_ref28","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-019-1123-4"}],"container-title":["Journal of Neuromuscular Diseases"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JND-210721","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T23:49:49Z","timestamp":1777506589000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JND-210721"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,11,2]]},"references-count":10,"journal-issue":{"issue":"6"},"URL":"https:\/\/doi.org\/10.3233\/jnd-210721","relation":{},"ISSN":["2214-3599","2214-3602"],"issn-type":[{"value":"2214-3599","type":"print"},{"value":"2214-3602","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,11,2]]}}}