Learning and behavioural issues in DMD/BMD
This EU-funded project connecting 19 partners aims to address a crucial aspect of Duchenne Muscular Dystrophy and Becker Muscular Dystrophy that was already recognised in 1861, when Duchenne de Boulogne first described the neuromuscular condition.
Brain involvement received less attention
However, in the last few decades, most of the efforts have focused on improving outcomes related to muscle weakness, whilst brain involvement has received less attention. The BIND project is the first project of this scale to improve characterisation of brain involvement in DMD and BMD, a previously overlooked field.
DDF is responsible for:
- The collection, curation, and integration of non- and clinical data.
- Providing a secure repository under Data FAIR Principles and GDPR regulations for all the data produced during the project;
- Supporting data related activities to be compliant with the predefined Ethics Requirements;
- Contributing to the creation of a data management plan following the H2020 guidelines. The plan addresses the FAIRification procedure of data, following the principles of Open Science, the accessibility, verification, re-use, curation and preservation of data;
- Participating in the communication and dissemination activities;
- Training of BIND partners on FAIR principles and data FAIRification processes.
Benefit the broader neuromuscular field
As well as being of great importance for the Duchenne and Becker community, this project might also benefit the broader neuromuscular and neurodevelopmental field. Brain comorbidity neurobiology is poorly understood, and standards of care not widely disseminated and implemented. This four-year project describing the contribution of a specific protein (dystrophin) to brain function could be of crucial value for the broader neurobiology field, including autistic spectrum disorders.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 847826.