@Article{info:doi/10.2196/22695,
author="Radu, Roxana
and Hern{\'a}ndez-Ortega, Sara
and Borrega, Oriol
and Palmeri, Avril
and Athanasiou, Dimitrios
and Brooke, Nicholas
and Chap{\'i}, Inma
and Le Corvec, Ana{\"i}s
and Guglieri, Michela
and Perera-Lluna, Alexandre
and Garrido-Aguirre, Jon
and Ryll, Bettina
and Nafria Escalera, Begonya",
title="Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study",
journal="JMIR Form Res",
year="2021",
month="Mar",
day="29",
volume="5",
number="3",
pages="e22695",
keywords="Share4Rare; rare disease; citizen science; participatory medicine; natural history; genotype; phenotype",
abstract="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. ",
issn="2561-326X",
doi="10.2196/22695",
url="https://formative.jmir.org/2021/3/e22695",
url="https://doi.org/10.2196/22695",
url="http://www.ncbi.nlm.nih.gov/pubmed/33779572"
}