PPMD is thrilled to announce that we have collaborated with a number of patient organizations around the globe to provide Leiden University Medical Center (LUMC), together with the Duchenne Data Foundation (DDF), funding to further continue deep phenotyping of the brain in Duchenne and Becker muscular dystrophy.

This research project, set to commence on October 1, aims to further enhance the understanding of brain involvement in Duchenne and Becker through further analysis of the extensive neuropsychological dataset and cross-correlation of the imaging and neuropsychological data.

Data analysis within the BIND project’s lifetime (January 2020 to June 2024) focused on the relation between variant location (‘genotype’) and neuropsychology and MRI (‘phenotype’). In this follow-up project, the investigators will look further into the phenotype by assessing the relation between neuropsychology and MRI. They will also further analyze the neuropsychology data. The aim of this one-year project is to uncover new insights that could drive future therapeutic strategies and improve patient outcomes.

PPMD is proud to have worked collaboratively with the following organizations: Duchenne UK, Muscular Dystrophy UK, DPP Netherlands, and DPP Belgium. Each have contributed financially to this continuation of the BIND research agenda with a total of $113,000 in funding. Additionally, LUMC will cover essential travel costs.

Dr. Hermien Kan, principal investigator and vice director at the CJ Gorter MRI Center of the department of Radiology at LUMC is looking forward to starting the project. “We are excited to be able to continue our collaboration with DDF to further our understanding of brain involvement in DMD and BMD and make these data available.”

The collaborative effort marks another step forward in the field of brain comorbidities in Duchenne/Becker, illustrating the commitment of patient organizations to advance science and enhance quality of life for people affected by Duchenne and Becker.

For more information, please read the press release.

About BIND Project

The BIND project is an EU funded project aiming to advance research and understanding of the role of dystrophin in the brain in Duchenne and Becker muscular dystrophy. It unites 19 partners from Europe and Japan and aims to research this critical but underexplored aspect of DMD/BMD. The goals of BIND are to localise dystrophin isoforms in the brain, enhance understanding of brain restoration, define brain comorbidities, and establish new assessment tools and therapeutic strategies.