Researchers at The Royal Children’s Hospital and Murdoch Children’s Research Institute, Melbourne are looking for children, adolescents and young adults who have a diagnosis of FSHD.
Am I or my child ELIGIBLE to participate?
You or your child are eligible to participate if you live anywhere in Australia, are aged between 0 and 21 years and have been diagnosed with FSHD.
WHAT does the study involve?
The study will be running over 2 years and requires a yearly visit to The Royal Children’s Hospital, Melbourne, two visits in total.
Health professionals including a neurologist, physiotherapist and psychologist will take your medical history, perform movement and questionnaire-based assessments to measure physical health, cognition, learning and quality of life.
HOW will this study benefit me or my child?
While it will not benefit you or your child directly, you will receive an assessment and follow-up report from a health care team at the forefront of clinical and research expertise in the management of children and young adults with FSHD. Primarily, you will be contributing to knowledge about how FSHD affects young people.
WHO to contact?
If you would like more details about these research studies, please contact:
Katy de Valle
Neuromuscular Research Physiotherapist and FSHD Study Coordinator
The Royal Children’s Hospital, 50 Flemington Rd, Parkville, Victoria, 3052
P. 03 9345 4287 E. katy.devalle@rch.org.au
