9 September 2022

Duchenne Parent Project and European Reference Network for Neuromuscular Diseases can now begin leveraging their FAIR data to benefit People Living With Rare Diseases.

Veenendaal, September 1st, 2022 | Joint Press Release: The Duchenne Parent Project, ERN EURO-NMD and FAIR Data Systems S.L. are proud to announce that with other collaborators they have made an important step in solving the long-standing obstacle of how to conduct queries between rare disease FAIR data registries without exposing sensitive patient details. That is, how to leverage the value of FAIR interoperability while simultaneously protecting patient privacy. The solution is based on technology that connects Web addresses to database queries, thus limiting database exploration to only pre-approved questions. It is available in the form of a publicly accessible demonstration prototype running in the Jupyter data analytics environment.

More info here !

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern