Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases.

Project Information

SHARE4RARE

Grant agreement ID: 780262

DOI

10.3030/780262

Project closed

EC signature date 25 October 2017

Start date 1 January 2018

End date 30 June 2021

Funded under

• INDUSTRIAL LEADERSHIP - Leadership in enabling and industrial technologies - Information and Communication Technologies (ICT)

Total cost

€ 2 165 047,37

EU contribution

€ 1 921 962,50

Coordinated by

FUNDACIO PRIVADA PER A LA RECERCA I LA DOCENCIA SANT JOAN DE DEU
Spain

Periodic Reporting for period 2 - 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.)

Reporting period: 2019-07-01 to 2021-06-30

Summary of the context and overall objectives of the project

Rare diseases (RDs) affect around 5 of every 10.000 people. Furthermore, this general group of diseases encompasses between 5.000 to 7.000 of different conditions. This facts make that rare diseases patients and caregivers often feel isolated because they are spread across countries and speak different languages, have delays in their diagnosis, with few information available about their diseases and no treatment options or research being developed. However, there are 30 million people all around Europe affected by these conditions, what account for 5% of the population. This numbers are quite big, and getting together patients and caregivers affected by RDs will promote collective intelligence to build a basis for future research projects, increasing the knowledge for this conditions and hopefully their treatment options.

The main objective was to create a digital place of encounter for RDs patients and caregivers where they can join forces to promote RDs knowledge and research. The goals derived from this objective are:
1. Create and curated medical content and tools useful to empower patients and caregivers in the management of their diseases.
2. Build a community where they can find their peers and share experiences.
3. Foster research by donating information about their condition to create citizen science.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

During this first half part of the project, the objective was to have a working platform designed for patientswith the patients, giving birth to the community and uploading medical contents.
- We have developed 5 co-design workshops with patients and caregivers from different countries of Europe to gather their needs and design the platform in consequence.
- The platform was officially launched on the 2nd of April of 2019. Since then, the community has welcome 2988 users (patients and caregivers of a RD).
- This community is the first in the RDs environment to use an algorithm of deep learning to connect users by their symptoms, increasing the chances to connect with people like them.
- Several material has being created since then, starting from the Share4Rare toolkit for patient advocacy, as a practical resource to empower patient advocates, and medical diseases-specific content or transversal medical content such as the paediatric palliative care resources by our clinical team.
- The community has a rigorous registration process to ensure the safety and security of the users and the patients’ data.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

Share4Rare pretends to be a global and unique community to offer to the rare disease community (patients, caregivers, clinicians, researchers and the general society) resources to be change makers. The approach of our platform is bio-psico-social, meaning this that users can find people like them for sharing experiences. The added value of the platform is that thanks to the CAPS approach we will make feasible research initiatives based in the principles of the collective intelligence and the wisdom of the crowd. This design is cutting-edge and will benefit in paralell not only the users involved also the global community affected for the different conditions included. Our aim is to serve different stakeholders to promote other research and services beyond the main projectes that will be runned in the platform. For the next period of the project the tasks performed until the WP 5 are essential for the sustainability of the project.

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