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Radu R, Hernández-Ortega S, Borrega O, Palmeri A, Athanasiou D, Brooke N, Chapí I, Lecorvec A, Guglieri M, Perera-Lluna A, Garri J, Ryll B, Nafria Escalera B
Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study
Share4Rare: A global collaborative social network to promote citizen science in rare diseases
Roxana Radu;
Sara Hernández-Ortega;
Oriol Borrega;
Avril Palmeri;
Dimitrios Athanasiou;
Nicholas Brooke;
Inma Chapí;
Anaïs Lecorvec;
Michela Guglieri;
Alexandre Perera-Lluna;
Jon Garri;
Bettina Ryll;
Begonya Nafria Escalera
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.
Citation
Please cite as:
Radu R, Hernández-Ortega S, Borrega O, Palmeri A, Athanasiou D, Brooke N, Chapí I, Lecorvec A, Guglieri M, Perera-Lluna A, Garri J, Ryll B, Nafria Escalera B
Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study