Project summary
Duchenne Parent Project is a Duchenne and Becker Muscular Dystrophy (DMD/BMD) patient organization in The Netherlands. Their patient-empowered registry (Duchenne Data Platform) was developed on the premise that patients own their own data, should collect data that are relevant to them, and should support data to be as usable as possible under defined conditions. Additional developments followed to transform the Duchenne Data Platform into a FAIR-enabling data source guided by FAIR data principles. It can now be linked to other FAIR data sources such as the European Reference Network for all Neuromuscular Diseases (ERN EURO-NMD).
Social impact
Within the data platform, patients have their own so-called virtual data locker that they can access through their cell phone or computer. By means of dynamic informed consent, patients can determine who has access to their data and when. Moreover, the data platform offers patients the opportunity to make their own queries as “citizen researchers”.
FAIR objectives
- To optimise the (re)use of DMD/BMD data stored in different data systems
- To answer complex research questions related to DMD/BDM effectively and accurately
- To be ready for the European health data infrastructure
Read more
Duchenne Data Platform (official website)
World Duchenne Organisation (official website)
FAIR elements involved
Findable
Accessible
Interoperable
Reusable
Key facts
- Rare Diseases Domain
- Patient Clinical Data
- Patient Reported Outcomes
- Data Access Restricted
- First sustainable patient-empowered FAIR registry
- Custom-designed Extract, Transform and Load pipeline
- Open source ‘FAIR-in-a-Box’ solution
Data type
- Clinical data (no personal information)
Organizations
- World Duchenne Organisation
- FAIR Data Systems S.L.
- LUMC
- Radboudumc
Data champions
Funding
Self funded (Duchenne Parent Project)