Support & advice
Facioscapulohumeral dystrophy (FSHD) Research Projects
Researchers at The Royal Children’s Hospital are looking for children and adolescents aged 6-18 years who have been diagnosed with FSHD, to participate in one or both of these studies:
The effect of the nutritional supplement (creatine monohydrate) on strength and muscle mass in children with FSHD
Investigating the use of both patient reported and physical FSHD specific assessments to measure strength and function
The creatine study involves 5 visits over an 8 month period and requires your child to drink a supplement in a glass of milk each day. We will assess your child’s strength and function to see if taking the supplement has any effect.
The assessment study requires two visits 2-3 weeks apart. This study can be completed in isolation or the assessments can be done in conjunction with the creatine study and will not require any extra time if you choose to participate in both research studies.
Recruitment of participants has begun at The Royal Children’s Hospital and researchers are hoping to roll out both research studies to other Australian sites.
If you would like more details about the research, please contact Katy de Valle