This is an important survey of how parents care for their children with SMA. It has been set up by Dr S Finkel at the Childrens Hospital in Philadelphia and Dr E Bertini at the Gesu Childrens Hospital in Italy, and aims to:
- Identify differences between and common approaches to the care given to children with SMA around the world
- To improve standards of care
- To educate doctors and therapist.
- It will also help in the design of the best possible clinical trial for any new therapeutic drug which becomes available.
The survey is voluntary and the information will be kept completely anonymous. There are about 70 questions. In time you will be able to access the resulting database yourself and find out (in numerical terms) answers to some of your own questions. The information you give is a simple way in which you can help others in a similar situation to yourself and provide a powerful collective view to lobby government. You can choose not to answer any of the questions which you feel are too private or sensitive.
The survey is best answered on-line (see below for link and further information), but we can provide a paper copy of the questionnaire instead, which you can complete and send to us or directly to America. Versions in Italian, French, German, Dutch, Japanese & Russian are to become available.
Survey link: http://www.surveymonkey.com/s.asp?u=750852296640
The JTSMA fully supports the survey.
Max Huxham (Chairman)
Chris Reed (Support Services Director). | 
