This letter is addressed to parents of children living with SMA and bereaved parents of a child with SMA.
Dear Parent,
Re International Parent Survey for SMA
Research into the care of children with SMA has in the past been quite challenging. The difficulties have often been access to families and numbers of families.
We now have an excellent opportunity to participate in research via the Internet.
Dr Richard Finkel, who is the Director of Neurology at the Children's Hospital of Philadelphia, has launched an on-line survey for parents to find out about the care of children with SMA. This survey is worldwide and data is already being collected in Europe.
This survey is for parents of children living with SMA and bereaved parents as everyone's experiences are highly valuable to this research. For bereaved parents the survey may appear to be focused on the present situation however, what is being surveyed is your experience and this has incredible value in promoting better services for everyone across the world.
The survey 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.
You can help make a real difference by participating in the survey and it's so simple to complete.
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, but if you don't have internet access we can provide a paper copy of the questionnaire instead, which you can complete and send to us, alternatively you can call the office and we'll fill the form in on-line on your behalf.
We at the Jennifer Trust are very happy to support this survey and we have a direct link to it from our website home page at www.jtsma.org. Please have a look at it if you can and if you would like to know more give Chris a call in the office.
You can visit the survey website yourself at:
http://www.surveymonkey.com/s.asp?u=750852296640
You may also have met Dr Finkel at our Conference this year at Ettington Chase. He ran a Parent Survey workshop on the Saturday and gave the Key Note Address on the Sunday.
I hope that you will take the time to participate in this survey, as I do believe it will help to improve the care for people with SMA and it also puts the subject on the world stage.
Best wishes
Christopher Reed
Director of Support Services
More Information
Complete the survey by following this link: http://www.surveymonkey.com/s.asp?u=750852296640
Letter from Richard Finkel and Enrico Bertini: Word Format, PDF Format | 
