DuchenneMap

Short Description of the STRIVE project

Isolation and loneliness are often a concern in those with Duchenne muscular dystrophy (DMD) and their carers. One way to tackle this problem is to build an online community with patients, carers and other stakeholders, offering help and support for those that need it. Connecting patients and carers to other stakeholders, including others with the disease, offers the opportunity to share advice and knowledge and to empower patients and carers to take control of their care. Duchenne Data Foundation believes that, by building this online community, they can not only tackle this issue but also gather useful information in one location which will help progress care and research in DMD.

Duchenne Data Foundation aims to establish an online platform that will act as a hub for all stakeholders associated with DMD across Europe. Patients, carers, healthcare professionals, patient organizations and regulators will be encouraged to participate in the community and engage with the platform. They will have access to up-to-date information and will also be encouraged to share knowledge. The online platform will operate as a data collection hub that will integrate worldwide sources of information for DMD in one unified environment. The platform will be multifunctional and act as a patient registry, used to connect patients with their local patient organizations, healthcare professionals and provide news regarding novel clinical trials, breakthroughs on drugs and general DMD news. The anonymized data, patient preferences, patient related outcomes, etc will serve the community, but will also be available for research and care and for regulatory purposes.

The online platform will be made available through a website which will be shared and promoted by the World Duchenne Organization and other patient organizations, and through social media, campaigns, conferences and networking events. The platform will then be expanded beyond Europe and is expected to launch globally by the end of 2018.

The Duchenne Data Foundation was founded in the Netherlands but is a global organization committed to promoting worldwide cooperation between Duchenne Parent Organizations and other stakeholders in order to enhance the understanding of the course of DMD/Becker muscular dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients.

 

Contact: George Paliouras (paliourg@iit.demokritos.gr)