SMA Parent Survey Needs Your Help

Child neurologist Richard Finkel at Children’s Hospital of Philadelphia, where he co-directs the MDA clinic, has developed a Web-based survey for parents of children with spinal muscular atrophy (SMA).

The survey, whose purpose is to gather information to help guide future care and research, takes about an hour to complete but doesn’t have to be finished in one sitting.

It contains questions about how the diagnosis of SMA was made; what kind of care your child has received for SMA; how you as a parent handle certain issues; your thoughts and experiences with clinical trials; and where you find information about SMA.

The survey is slated to close for North American parents Oct. 1.