IamGSD PAPERS AND REPORTS
The following papers and reports have been led by IamGSD and it’s board members.
CONTINUUM OF CARE FOR MCARDLE DISEASE: A PRACTICAL TOOL FOR CLINICIANS AND PATIENTS
Led by IamGSD, 2023
A “Continuum of Care” model developed by expert clinicians and patient advocates led by IamGSD President Dr. Stacey Reason. A practical tool for clinicians and patients, published in a leading journal with Open Access. It identifies areas of learning (diagnosis; understanding; acceptance; learning and exercise) to help determine the patient’s needs and optimize their care.
TOWARD AN UNDERSTANDING OF MCARDLE DISEASE
A cross-sectional international questionnaire study
This patient-led study aimed to enhance understanding of the day-to-day experience and health-related quality of life of individuals with McArdle disease (GSD5). 290 participants across 16 countries.
Reason SL, Cadzow R, Jegier BJ, Nwora A, Lucia A, et al. (2022) Toward An Understanding of McArdle Disease: A Cross-sectional International Questionnaire Study. Journal of Rare Disorders: Diagnosis & Therapy, Vol. 8 No.12:84.
CLINICAL PRACTICE GUIDELINES FOR GSDV AND VII
Led by IamGSD, 2021
An international team of expert clinicians and researchers, led by IamGSD President Dr. Stacey Reason, prepared internationally agreed Clinical Practice Guidelines for GSD V (McArdle disease) and GSD VII (Tarui disease), outlining diagnostic and management recommendations, including emergencies. Read more about them and download free PDF.
NUTRITIONAL KETOSIS IN MCARDLE DISEASE: A SITUATION REPORT
This statement is intended to assist clinicians and researchers by providing an insight into the knowledge gained from patients’ own testing and development of nutritional ketosis. This may inform formal research and help to speed the path to an eventual clarification of whether this is a suitable nutritional strategy for many McArdle patients.