A consortium bringing together patient associations, clinicians and methodologists from several countries reports on the FAIR project, which aims to better coordinate and standardise registries of patients with Duchenne muscular dystrophy (DMD):
- it is based on the Findable, Accessible, Interoperable and Reusable (FAIR) use of patient data,
- it is part of a larger ten-step project addressing technical, ethical, social and legal issues related to DMD registries,
- the project began in 2021 with real progress (establishment of the Duchenne Data Platform) but also with obstacles according to the stakeholders involved.
The authors emphasise that this is more of a standard to be achieved than an imposed model.
