With a global reach the Duchenne Data Foundation (DDF) is a spinoff of World Duchenne Organization, the global patient organization. Duchenne Data Foundation has as its purpose:
1. Worldwide collaboration between Duchenne Parent organisations in order to enhance the understanding of
– the course of DMD/BMD,
– the effects of treatments,
– the needs and preferences of DMD/BMD patients,
– all other aspects relevant to the lives of DMD/BMD patients.
2. The Duchenne Data Foundation will in particular devote itself to the realisation of this task by way of the following goals:
– Collect data from PROs, PROMs, PMR etc. in a data collection hub.
– Integrate worldwide sources of information for DMD such as databanks, biobanks and registries in one unified environment.
– Provide solid and safe information to parents, clinicians, regulators and other stakeholders.
– Promote and support research.
– Develop tools for better use of existing data.