Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study (Preprint)

Abstract

BACKGROUND Rare disease communities are spread around the globe and segmented by their condition. The most of the patients being affected by a rare disease have no research on their condition because of lack of knowledge due to absence of common groups from where to raise knowledge and promote research. OBJECTIVE To build a safe and secure community of rare diseases patients without geographical or language barriers to promote research. METHODS Co-creation design methodology was applied to build the first Share4Rare final version, with consultation and input from a variety of stakeholders (patients, caregivers, clinicians & 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 diseases research requires a global collaboration in which patients and caregivers have a key role. Collective intelligence methods implemented in digital platforms allows to reduce geographical and language boundaries, and involve in a unique and universal project patients. Their contribution is essential to reduce the 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 the patients with rare conditions. The co-design methods with patients have been essential to perform a patient centric design of Share4Rare.