Bringing Data to life

In Duchenne Data Foundation (DDF), we strive to bring data to life to improve research and care for dystrophinopathies. Through the Duchenne Data Repository, we aim to connect, collect, and make accessible all different types of dystrophinopathy data from various sources at a global level.

The current research landscape in the dystrophinopathy field is characterized by fragmented and heterogenous data that create barriers in diagnosis, care and therapy development. Though a plethora of data is available on dystrophinopathies, they vary in maturity, format and collection approach depending on the country, hospital, research institution, etc. collecting the data.

DDF started addressing the need for findability and access to global dystrophinopathy data sources, in 2020  by the establishment of the Duchenne Data Repository. The Repository can host a range of data types from pre-clinical data to natural history data, clinical trial data, patient-generated health data and others.

A FAIR tool

The Repository promotes FAIR  (Findable, Accessible, Interoperable and Reusable by both humans and machines) data, is compliant to all GDPR, security, data protection and privacy standards and policies. By using FAIR Data Point technology, the description of the data stored and/or indexed in the Repository can be publicly available. Furthermore, it provides data sustainability to different stakeholders of the dystrophinopathy community.

Currently, the Duchenne Data Repository hosts data from 347 Duchenne and Becker Muscular Dystrophy clinical trials and is also the central storage for the data (human and mouse) generated during the BIND Project.

Read more on the Duchenne Data Repository.

The Duchenne Data Repository IT Team

The Repository is managed by a highly qualified team that assures its development and sustainability.

George Paliouras, Chair of the Duchenne Data Foundation, in charge of the monitoring, supervision and development of the Repository.

Reli Todea, Senior Software engineer, in charge of the collection, curation and publication of DMD and BMD data in the Repository.

Sergiu Siminiuc, Junior Software engineer, in charge of the design, implementation, and maintenance of biomedical databases, as well as the development of applications for the collection and integration of relevant information.

For inquiries or more information, please contact George Paliouras, [email protected]