{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:55:29Z","timestamp":1782842129510,"version":"3.54.5"},"reference-count":12,"publisher":"JMIR Publications Inc.","issue":"3","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"\n Background<\/jats:title>\n Rare disease communities are spread around the globe and segmented by their condition. Little research has been performed on the majority of rare diseases. Most patients who are affected by a rare disease have no research on their condition because of a lack of knowledge due to absence of common groups in the research community.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n We aimed to develop a safe and secure community of rare disease patients, without geographic or language barriers, to promote research.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n Cocreation design methodology was applied to build Share4Rare, with consultation and input through workshops from a variety of stakeholders (patients, caregivers, clinicians, and researchers).<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n The workshops allowed us to develop a layered version of the platform based on educating patients and caregivers with publicly accessible information, a secure community for the patients and caregivers, and a research section with the purpose of collecting patient information for analysis, which was the core and final value of the platform.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Rare disease research requires global collaboration in which patients and caregivers have key roles. Collective intelligence methods implemented in digital platforms reduce geographic and language boundaries and involve patients in a unique and universal project. Their contributions are essential to increase the amount of scientific knowledge that experts have on rare diseases. Share4Rare has been designed as a global platform to facilitate the donation of clinical information to foster research that matters to patients with rare conditions. The codesign methods with patients have been essential to create a patient-centric design.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/22695","type":"journal-article","created":{"date-parts":[[2020,12,20]],"date-time":"2020-12-20T10:18:11Z","timestamp":1608459491000},"page":"e22695","source":"Crossref","is-referenced-by-count":16,"title":["Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study"],"prefix":"10.2196","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0349-7273","authenticated-orcid":false,"given":"Roxana","family":"Radu","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0335-7641","authenticated-orcid":false,"given":"Sara","family":"Hern\u00e1ndez-Ortega","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1092-9924","authenticated-orcid":false,"given":"Oriol","family":"Borrega","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6171-5793","authenticated-orcid":false,"given":"Avril","family":"Palmeri","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1140-1286","authenticated-orcid":false,"given":"Dimitrios","family":"Athanasiou","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7374-8920","authenticated-orcid":false,"given":"Nicholas","family":"Brooke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8999-9038","authenticated-orcid":false,"given":"Inma","family":"Chap\u00ed","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2788-9180","authenticated-orcid":false,"given":"Ana\u00efs","family":"Le 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Escalera","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2021,3,29]]},"reference":[{"issue":"6","key":"ref1","first-page":"359","volume":"18","author":"Baldovino, Simone","year":"2016","journal-title":"Isr Med Assoc J"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1007\/s11427-017-9099-3"},{"key":"ref3","unstructured":"Orphan designation: overviewEuropean Medicines Agency2021-02-24https:\/\/www.ema.europa.eu\/en\/human-regulatory\/overview\/orphan-designation-overview#:~:text=About%2030%20million%20people%20living,medicines'%20in%20the%20medical%20world"},{"key":"ref4","unstructured":"Rare diseasesEuropean Commission2021-03-03https:\/\/ec.europa.eu\/info\/publications\/rare-diseases_en"},{"key":"ref5","doi-asserted-by":"publisher","DOI":"10.4161\/rdis.23579"},{"key":"ref6","unstructured":"BlackNMartineauFManacordaTDiagnostic odyssey for rare diseases: exploration of potential 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