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EUROMAC is a registry of patients affected by McArdle Disease and by other forms of rare neuromuscular glycogenosis where exercise intolerance is the main symptom.

The first two EUROMAC registry articles are now available

The first two EUROMAC registry papers have been recently published (November 2020) in the Orphanet Journal of Rare Diseases. The first paper describes the creation and implementation of the EUROMAC registry (https://rdcu.be/cbIit); while the second paper reports the data collected from approximately 300 patients (https://rdcu.be/cbIh0). 

EUROMAC registry continuation

We are glad to announce you that the continuation of the EUROMAC registry is ensured for the next 3 years through funding obtained at two Spanish national calls.  

Pilot clinical trial with valproate shows no significant benefits in McArdle disease patients.

In a phase II open label, feasibility pilot study to assess efficacy of six months treatment with Valproate in 16 patients with McArdle disease, no clinically meaningful changes were observed in any of the primary or secondary outcome measures including: VO2peak, 12 min walk test and muscle biopsy to look for a change in the number of phosphorylase positive fibres between baseline and 6 months of treatment.  



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