Data from the European registry for patients with McArdle disease (EUROMAC): functional status and social participation.

Walaa KaraziRenata S ScalcoMads G StemmerikNicoline LøkkenAlejandro LuciaAlfredo SantallaAndrea MartinuzziMarinela VavlaGianluigi ReniAntonio ToscanoOlimpia MusumeciCarlyn V KouwenbergPascal LaforêtBeatriz San MillánIrene VieitezGabriele SicilianoEnrico KühnleRebecca TrostSabrina SacconiHacer DurmusBiruta KierdaszukAndrew WakelinAntoni L AndreuTomàs PinósRamon MartiRos QuinlivanJohn VissingNicol C Voermansnull null

Published in: Orphanet journal of rare diseases (2023)

The EUROMAC registry have provided insight into the functional and social status of participants with GSD5: most participants are socially active despite limitations in physical and daily life activities. Regular physical activity and different dietary approaches may alleviate fatigue and pain.

Keyphrases

physical activity
mental health
healthcare
sleep quality
chronic pain
body mass index
pain management
big data
machine learning
depressive symptoms
spinal cord