The Bioinformatics and Biomedical Signals Laboratory of the Research Centre for Biomedical Engineering (CREB UPC) is taking part in the development of an awareness-raising platform to connect patients, relatives, researchers, health professionals, volunteers and public representatives involved in the area of Rare Diseases (RD).
Share4Rare is backed by the high motivation of a group of citizens who are directly or indirectly related with rare diseases, and by their experiences. Based on existing knowledge and initiatives, a space will be promoted for debate and joint creation, and research will be stimulated by sharing data, with a focus on the patient. The aim is to improve the patient’s quality of life, achieve better management of these types of diseases, and gather scientific knowledge through shared data on RD.
The new platform will be based on experience gained through management of the Rare Commons (RC) research platform, which now covers 9 rare diseases. RC has shown that collective intelligence from the parents of children with rare diseases increases our knowledge of the disorders.
S4R will improve the response to this prior experience, by meeting two challenges:
- Increase the power of users within the platform: a tool will be developed based on a bottom-up model, at the centre of which is the patient.
- Provide an innovative approach to research into rare diseases: groups of pathologies will be studied instead of individual diseases, to identify the main distinguishing and shared characteristics of the diseases under study.
The pilot of this new platform will be available at the start of 2019 and will initially work with two groups of rare paediatric diseases: neuromuscular disorders and rare tumours.
The voice of patients is at the heart of the project. Consequently, in addition to the UPC and the Hospital Sant Joan de Déu, which is the project leader, two patient organizations are members of the consortium: the World Duchenne Organization (UPPMD) and the Melanoma Patient Network Europe (MPNE). Other members are: Omada Interactiva, The Synergist, Newcastle University and Asserta.
The project "SHARE4RARE: Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases" has received funding from the European Commission, through call H2020-ICT-11-2017. It has also received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 780262.