TY  - JOUR
AU  - Radu, Roxana
AU  - Hernández-Ortega, Sara
AU  - Borrega, Oriol
AU  - Palmeri, Avril
AU  - Athanasiou, Dimitrios
AU  - Brooke, Nicholas
AU  - Chapí, Inma
AU  - Le Corvec, Anaïs
AU  - Guglieri, Michela
AU  - Perera-Lluna, Alexandre
AU  - Garrido-Aguirre, Jon
AU  - Ryll, Bettina
AU  - Nafria Escalera, Begonya
PY  - 2021
DA  - 2021/3/29
TI  - Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study
JO  - JMIR Form Res
SP  - e22695
VL  - 5
IS  - 3
KW  - Share4Rare
KW  - rare disease
KW  - citizen science
KW  - participatory medicine
KW  - natural history
KW  - genotype
KW  - phenotype
AB  - 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. 
SN  - 2561-326X
UR  - https://formative.jmir.org/2021/3/e22695
UR  - https://doi.org/10.2196/22695
UR  - http://www.ncbi.nlm.nih.gov/pubmed/33779572
DO  - 10.2196/22695
ID  - info:doi/10.2196/22695
ER  -