%0 Journal Article
%@ 2561-326X
%I JMIR Publications
%V 5
%N 3
%P e22695
%T Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study
%A Radu,Roxana
%A Hernández-Ortega,Sara
%A Borrega,Oriol
%A Palmeri,Avril
%A Athanasiou,Dimitrios
%A Brooke,Nicholas
%A Chapí,Inma
%A Le Corvec,Anaïs
%A Guglieri,Michela
%A Perera-Lluna,Alexandre
%A Garrido-Aguirre,Jon
%A Ryll,Bettina
%A Nafria Escalera,Begonya
%+ Sant Joan de Déu Research Institute, Santa Rosa 39-57, Esplugues de Llobregat, 08950, Spain, 34 669167771, bnafria@sjdhospitalbarcelona.org
%K Share4Rare
%K rare disease
%K citizen science
%K participatory medicine
%K natural history
%K genotype
%K phenotype
%D 2021
%7 29.3.2021
%9 Original Paper
%J JMIR Form Res
%G English
%X Background: 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. Objective: We aimed to develop a safe and secure community of rare disease patients, without geographic or language barriers, to promote research. Methods: Cocreation design methodology was applied to build Share4Rare, with consultation and input through workshops from a variety of stakeholders (patients, caregivers, clinicians, and researchers). Results: 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. Conclusions: 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. 
%M 33779572
%R 10.2196/22695
%U https://formative.jmir.org/2021/3/e22695
%U https://doi.org/10.2196/22695
%U http://www.ncbi.nlm.nih.gov/pubmed/33779572