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

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Livrables

Toolkit for patient advocacy

Toolkit to help rare disease communities raise awareness and advocate for better clinical research in the rare disease field

Co-development model and guidelines

Co-development of the process and definition of guidelines to setup and grow up a participatory social community of patients/families. This comunity is created to work together to improve the quality of life of patients with rare diseases.

Guidelines for the creation and management of every type of communities.

Strategic guidelines for the creation and management of the communities offering tools to ensure a user centred approach that can contribute to the sustainability of the communities.

Collection of scientific content about the one specific group of diseases selected to pilot the platform: rare tumours.

Report about the knowledge generated (citixen science) using collective intelligence tools

Tools developed by the Drupal Community to be implemented in Share4Rare

New tools of Drupal developed by the community to be embeded in the design of the Share4Rare platform

Share4Rare platform

Initial version of the platform to be tested with two specific groups of rare diseases: neuromuscular diseases and rare tumors.

Guidelines about the structure of the communities: layers, contents and interactions.

Report with the conceptual proposal of the design of the two types of communities of S4R

Guidelines for the content development for the public layer of Share4Rare

Definition of the public content that is going to be published for all the users of the platform and the procedures for its update.

Reference mapping of every diseases group.

Data base of resources related specific communities to be available for the users of specific diseases groups.

Guidelines for the content development for the awareness and empowerment communities of Share4Rare.

Definition of the specific content about rare disease groups that is going to be published for the users of the awareness and empowerment communities, and the procedures for its update.

Collection of scientific content about the one specific group of diseases selected to pilot the platform: neuromuscular diseases.

Report about the knowledge generated (citixen science) using collective intelligence tools.

Report on Data Access Standard Operational Procedure

Report on the accountability and composition of the Share4Rare Data Access Committee and the creation of a Standard Operating Procedure (SOP) for data access requests.

Research studies on rare disease

Report on the research studies conducted in Share4Rare and their related dissemination and communication activities, content and data collection strategies.

Social Impact and ROE report

Report to analyse the social impact of th platform and the specific impact regarding engagement of the several users of the specific communities.

Dissemination and communication plan

Plan to communicate the project and disseminate the activites, knowledge and other outcomes achieved.

Interim report to European Commission
Report with the configuration and working rules of the Editorial Review Committee.
Report on Communication material and content

Collection of the communication materials and content developed during the project.

Report with the rules about privacy and access implemented in the platform

"Report for the implementation of the right tools to ensure the procedures and rights regarding the personal and clinical data donation. Deliverable aligned with the ""Data Management Plan"" (D 7.1)"

Report on online community engagement

Definition with co-design activites of the rules, tasks and activities that will allow the engagement of the different types of users in the different social communities of the platform.

Final Report to European Commission
Report about the roles and permissions of the different users.

Report with the definition of roles' categories and about their permissions to access to the differnet layers of the platform. This information will be validated in the co-creation activities and assessed at technological level by the IT partners.

Report of the connection with existing projects and initiatives

Report with the Interactive cooperation established during the project with other existing projects, initiatives and platforms.

Protection of Personal Data (POPD) report
1st Annual report of the impact of the contents of the platform.

Report with the analysis of the impact of the contents of the platform (statistical and qualitative analysis) during the annually between the M12 and M24. The first year of the project is not going to be published any content in the platform is the deadline for the development of the platform.

Report about the patients' involvement to generate citizen science on rare diseases.

Design the rules of interaction of the users regarding the different categories of contents and tools of the platform.

Annual report of the impact of the contents of the platform.
Report on captology results

Report of the captology outcomes achived using different tools and chanels

Report on Communication and dissemination activities
Report of the data integration

Report about the design and development of modules for the integration of heterogeneous data sources regarding rare diseases.

Report of the conceptual design of the CAPS

Conceptual design for the IT development of the platform including the outcomes of the co-design activites (workshops and hackathons)

Data Management Plan

Guidelines on the type of data and how it will be collected and stored, rules regarding privacy and ownership, together with the clearset up to ensure the access of the data via the European Open Data Portal.

Publications

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

Auteurs: Roxana Radu, Sara Hernández-Ortega, Oriol Borrega, Avril Palmeri, Dimitrios Athanasiou, Nicholas Brooke, Inma Chapí, Anaïs Le Corvec, Michela Guglieri, Alexandre Perera-Lluna, Jon Garrido-Aguirre, Bettina Ryll, Begonya Nafria Escalera
Publié dans: JMIR Formative Research, Numéro 5/3, 2021, Page(s) e22695, ISSN 2561-326X
Éditeur: JMIR Publications
DOI: 10.2196/22695

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