Data saves lives Data for care
and a cure.
Providing the global Duchenne and Becker
community the tools to promote knowledge
exchange to improve care and accelerate
effective treatment
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PATIENT INVOLVEMENT SUPPORT, FACILITATE AND
OPTIMIZE RESEARCH
Develop a safe and structured environment
for the DMD/BMD community to consult
and facilitate the exchange of expertise
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BETTER USE OF DATA ONE SAFE AND SECURE SPOT
FOR PATIENT DATA
Provide a unified data environment for patient data
collected from heterogeneous sources
in line with safety laws and FAIR principles
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DEVELOP CARE KNOWLEDGE collect and provide
data to support care
Support, facilitate and optimize Duchenne and
Becker Muscular Dystrophy care through
better use of care data
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Goal 1

SAFE AND USEFUL DATA LINKS

One unified environment for patient data, in line with security and legal standards, and FAIR principles.
Goal 2

OPTIMAL CARE AND PRACTICE

Develop tools for better use of new and existing data to support effective, affordable and safe treatment of people with DMD/BMD.
Goal 3

EQUITABLE DATA ACCESS

Focusing on promoting access, use and re-use of data to fuel research and drug development that matters to patients.

OUR MISSION, BRINGING DATA TO LIFE TO IMPROVE THE LIFE OF DMD/BMD PATIENTS

We bring together fragmented data pieces of the Duchenne and Becker muscular dystrophy (DMD/BMD) world and test innovative solutions, scaling them to make a global impact. To that end, we coordinate and participate in projects covering multiple areas:

  • Patient involvement
  • Data ownership
  • FAIR data
  • Data use and reuse
  • Access to data
  • Tools for data analysis
  • Unifying datasets
  • Data collection

INTERNAL PROJECTS

WHAT DDF SAYS

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