The project: Share4rare
A rare disease affects less than 5 in 10.000 persons, and the 50% of them are children. Keeping this number in mind, it is easy to imagine that rare disease patients and their families have to cope with delayed diagnosis, fewer therapeutic options and isolation in addition to their disease.
At the same time, we know between 6000 and 8000 rare diseases today- which means that being rare is far from rare! 1 in 17 people are affected by a rare disease and this means that 30 million Europeans are living with a rare condition today.
Share4Rare (S4R) is a collective online platform with the ambition to make a difference for rare disease patients and their families. In the enabling S4R environment, patients and families are in direct contact with researchers and clinicians to become researchers of their own disease. Interactive platforms will break isolation and allow learning across rare conditions, so that being rare no longer means being alone.
S4R stems from the awareness that real progress, especially in a rare disease, requires sharing: sharing of knowledge, sharing of experiences, sharing of clinical data and the hope of making a lasting contribution to the collective effort of helping children with rare conditions!
Leader: The Synergist
The main objective is to build a collective participatory and international bottom-up platform of patients, caregivers, researchers and other stakeholders involved in the field of rare diseases and the collection of knowledge about them.
This WP is going to be based on collaboration, co-creation, co-development, and community building.
Patients and their relatives are at the heart of the platform. With this community of users we are going to co-create, co-develop, and co-design tools and contents of the platform with the help of specific workshops and engagement strategies (surveys, social media, webinars…). Moreover, online and offline tools for patients advocacy are going to be created with the aim of increasing the awareness about collective intelligence as a methodology for research on rare diseases.
Leader: Melanoma Patient Network Europe
Share4Rare is going to include two different types of communities, with two different goals: awareness and empowerment.
The first one, the awareness community, is going to facilitate the interactions of patients and relatives at an international level, offering them social media resources, such as wiki spaces, open forums, etc.
The second one, the empowerment communities, are going to promote collective research projects thanks to the close collaboration of patients and families with the scientific team. The rules of this community are going to be based on a win-win approach for all those involved. Educational medical chapters are going to be offered to the families, to increase their knowledge and skills to manage a specific disease. Scientific surveys will also be offered for the donation and collection of valuable medical knowledge on rare diseases. During the collaboration of patients/families with this community, a continuous feedback about the common knowledge collected by the group will be offered.
The main goal of this WP is to define the blueprint of both communities and pilot them with two specific groups of diseases: paediatric rare tumours and neuromuscular diseases.
Leader: Òmada Interactiva
Òmada, in partnership with UPC (Universitat Politècnica de Catalunya), is going to design and develop the Share4Rare platform, which will be able to manage a large quantity of data generated by the users. The whole process is going to be performed using open source tools.
The system is going to analyse and integrate every type of data produced by the community, giving back automated reports with two main goals: to increase the collective scientific intelligence and to enhance the engagement of the users.
Two hackathons are going to be performed during the project, with the aim of involving the community in the specific development of technological tools to be included in the Share4Rare platform. This activity is aligned with the participatory and collective approach of the project, based in the building capacity of communities formed by all the different stakeholders linked to rare diseases.
Leader: Sant Joan de Déu Foundation
The aim of this WP is to provide all of the content for the different communities of users in Share4Rare. Different kinds of content will be included in the platform to enable us to achieve these goals:
- Education. A general environment that will offer access to reliable external sources of information (scientific databases, patient associations). The content will be curated by the users to help them identify which content the users find most useful, the most visited contents and valuable information previously accessed by the users.
- Sharing. This layer is going to increase the awareness of the communities of patients through online tools addressed to facilitate the interaction between users and other stakeholders.
- Empowerment. It is going to be the core of the platform. Patients and families are going to co-participate to increase the knowledge of two specific groups of rare diseases by constantly sharing data and information with the medical researchers. Such a democratic citizen science effort will make the patient an active part of the scientific progress.
Leader: Asserta Global Healthcare Solutions
Share4Rare aims to have a positive impact on the society. The evaluation of the expected social impact of the platform, as the ROE (Return Of Engagement) and the PAM (Patient Activation Measures) among other relevant metrics, will help to assess the benefits of being involved in Share4Rare.
Another important task is to achieve sustainability of the platform after the end of the three-year project in order to extend it to other rare diseases. An exploitation model will be defined implemented over the course of the project to study different opportunities to make feasible the scalability of the platform with the inclusion of new groups of diseases.
Leader: World Duchenne Organization/UPPMD
The tasks of this WP are related to communication about the project and the dissemination of its results addressed to the general public and target groups of interest for the duration of the project.
Communication is essential to increase awareness in society about the needs and features of rare diseases. Different activities will be performed and different means of communication will be used, with the aim achieving significant impact among the different user groups which include: patients/families, scientific community, and general society.
Social media networks are going to be a powerful tool to spread the word about the project and also to attract users to the platform.
Participation in scientific events will ensure dissemination of the project and its outcomes.
Leader: Polytechnic University of Catalonia
The main aim of this working package is to follow the European privacy regulation for the collection, usage, and storage of patients’ clinical data in the Share4Rare platform.
Standards for data integration, able to integrate heterogeneous sources of data into homogeneous, standards-based personal health records system, will be essential to enable the implementation of biostatistics tools to analyse the donated data.
Leader: Sant Joan de Déu Foundation
The FSJD is in charge of coordinating the project. It acts as a link between the project partners and the European Commission, maintains a constant communication with the partners and ensures the on-time delivery of the work.
Several boards are created to ensure the coordination of the project and the development of the different tasks:
- Project board, formed by one representative of every partner organization.
- User boards, whose mission will be to give feedback on the advances of the platform, from a user point of view. The membership of this board will be patients or their relatives, with different levels of expertise in the disease and in the use of digital tools.
- Advisory board, an external body composed of distinguished experts in the field of the rare diseases. They will assist the project in self-evaluation based on the development of the project. Patients also are going to be members of this board.
Leader: Sant Joan de Déu Foundation
The FSJD is in charge of ensuring that the activities of the Share4Rare project are aligned with the ethical considerations of the rights of the paediatric patients, their families and in general with clinical research.
For this reason the project has the approval of the Ethics Committee of our institution and we have delivered an Ethics Report about the project.