A study conducted in part by researchers at Henri Mondor Hospital in Paris reports several persistent difficulties in the design and use of registries for patients with limb-girdle muscular dystrophy (LGMD). In particular, they highlight:
- variability in the design of the ten registries published in the scientific literature, which makes data interoperability difficult;
- the limited use of registries to conduct natural history studies, representing a missed opportunity to take advantage of well-characterised populations;
- the fact that many registries are not published, limiting the data available for global research;
- the under-representation of low-income countries in these registries.
The establishment of a global network of registries incorporating standardised data could help to resolve these issues and accelerate research on LGMD.
