Clinical Practice Guidelines

Clinical Practice Guidelines for glycogen storage disease V & VII (McArdle and Tarui diseases) from an international study group. Neuromuscular Disorders 31 (2021) 1296–1310.
https://doi.org/10.1016/j.nmd.2021.10.006

Visit the following web page to download a free booklet PDF of the 15 page CPG paper, plus the 18 pages of Supplementary Material.

https://www.iamgsd.org/cpg

McArdle’s specialized services

• Due to the rarity of McArdle’s, most neurologists will see only one or two patients. They therefore cannot gain a full understanding of the condition.

• Referral to an expert center with a multi-disciplinary approach to patient care is therefore highly desirable.

• A specialized service for people with McArdle disease and related disorders may be available in your country†. There is a directory of clinicians on the medical menu of the IamGSD website.

• Patient support groups often liaise with these specialist services and support patients attending the clinics.

† For other countries, we suggest requesting the names of suitable specialists from national support groups for Glycogen Storage Disease or Muscular Dystrophy. Also try searching PubMed for research papers on McArdle disease and consider the names and institutes of the contributors.