Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care
The workshop titled 'Development of diagnostic criteria and management strategies for McArdle Disease and related rare glyco(geno)lytic disorders to improve standards of care', was organised in collaboration with the EUROMAC consortium. The workshop aimed to agree diagnostic criteria for these rare disorders, best practice for management to improve standards of care in McArdle disease and to plan a strategy for future international clinical trials.
|At the end of the workshop, the following deliverables were achieved:
Diagnostic algorithm to aid diagnosis of these rare conditions.
A recommendation that physical activity is the most important therapy for McArdle disease.
|For the other very rare muscle glycogenosis there was no evidence that physical activity was harmful and should be encouraged.
We identified the need to develop a quality of life questionnaire specific to this patient population.
|We agreed a plan to develop a randomised controlled trial for exercise training in people with McArdle disease.
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To download the report of the workshop, please visit the Neuromusculars Disorders website.
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