MISSION & VISION

BRING DATA TO LIFE TO IMPROVE THE WORLD OF DYSTROPHINOPATHIES: Duchenne and Becker Muscular Dystrophy, and (manifesting) carriers.

The Duchenne Data Foundation (DDF) works in close collaboration with the World Duchenne Organization (WDO) to achieve the best possible outcomes for the global dystrophinopathy community. This includes people living with Duchenne and Becker Muscular Dystrophy, as well as people carrying the Duchenne and/or Becker gene mutation.

DDF brings together all sources of data related to dystrophinopathies, to make an impact for the global community. We do this by building innovative approaches to connecting data, and to promote knowledge sharing that will form our strategy into the future. The Duchenne Data Foundation, has also endorsed since 2019 the FAIR Data Declaration of the World Duchenne Organization.

 

Our strategic direction is built around four key pillars:

RESEARCH & DEVELOPMENT

DDF connects data to generate new evidence for more efficient and faster research in therapy development and care. Our aim is to create an environment of dystrophinopathy data from various sources and locations, following the strict standards of data governance and ‘FAIR’ principles. This evidence will inform the development of best care practises and therapies, and both support and inform regulatory and policy processes. DDF enables safe exchange of information to inform all areas of research and stakeholders.

STANDARDS OF CARE & QUALITY OF LIFE

DDF strives for all people living with dystrophinopathies around the world to have access to the latest standards of care and the best quality of life. This includes early diagnosis and surveillance alongside quality of life initiatives. We will achieve this by collecting and analyzing data related to patient needs and preferences and connecting patients with the services they need.

EDUCATION & TRAINING

DDF provides training to all stakeholders. Our goal is to empower the global dystrophinopathy community voice to ensure research is patient and family centred and led. DDF will work alongside WDO to facilitate the exchange of timely, evidence based and accurate information so all stakeholders can make informed decisions. This includes, but is not limited to, training on clinical trials and research, and patients being in control of their data.

DATA GOVERNANCE & ACCESS

Patients should be in control of their own data. DDF advocates for people living with dystrophinopathies to be in control of their own data. At the same time, the dystrophinopathy community should be in the position to benefit from the insights of the data. Patients should own, control and share their data.