A significant benefit for children participating in this trial is that they will be at the forefront of clinical research.
Children will be involved in a unique experimental treatment that is being extended to include regional NSW areas.
Dr. Amy Sman is currently conducting a research trial investigating strength training for children with CMT (ages 6 to 17 years). The current venues for the study are the Children’s Hospital Westmead and also at Sydney Children’s Hospital Randwick. The trial is being extended to regional NSW areas to include Newcastle, Orange, Canberra, the Illawarra and areas between these locations and Sydney. To action this extension of the trial, it is vital that a minimum of 4 children can attend one location in one of these areas to enable Amy and her team to visit them!
Amy has written to following overview:
Why are we doing this
- The trial aims to strengthen the most affected muscles in CMT; the muscles that lift the foot up. Foot weakness is a major problem and contributes to falls, ankle sprains, foot deformities and disability.
- There is currently no treatment for this problem.
- The trial consists of a 6-month exercise program with a 2-year follow-up to
- There are two exercise programs, one with low intensity and one with a high intensity. The treatment the child will be allocated to is randomised.
- The 6-month exercise program involves doing the exercise 3 sessions a week at home and takes about 20 minutes in total per session.
- There is one fortnightly session with a physiotherapist at the Children’s Hospital at Westmead at Sydney Children’s Hospital Randwick or at home
- Training times are dependent on the location and availability of the therapist/participant.
- There are 4 big visits to The Children’s Hospital at Westmead for outcome measurements to see the effects of the exercise. These are conducted at baseline, after the training program, at 12- and 24 months on a Monday or Thursday from 12-4pm.
What is in it for the participants
- There are no treatments for CMT. Participating in this trial means that children are in the unique position that they are the first to receive a potential treatment that is closely monitored by a physiotherapist
- This trial includes close monitoring of the child’s progression for 2 years using sophisticated measures such as the CMT Paediatric Scale that measures disability, MRI of the muscles and 3D analysis of the child’s gait.
- It will provide this generation and future generation with more information regarding management of CMT and will give researchers information to target future research in finding a cure
- Financial assistance is offered for the travel to Westmead during the 4 outcome measurement visits
When we have several families in a particular location, we can perform the exercises as a group (saving time for both parties) provided that all participating children can be seen at one home. This could really help compliance to the exercises for the kids when they are in similar company and will make it more fun for them. Parents could rotate for example if there are 5 families, it can be at one person’s home one fortnight and in another one the next fortnight.
The register your interest and to find out more information please contact:
Dr. Amy Sman | Postdoctoral Research Fellow | Physiotherapist
T 02 9845 3004 | T 02 9351 9011 (Tue)
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