Demographics

Thank you for taking the time to complete these surveys. We are developing a tool to capture meaningful daily tasks for children and adults with spinal muscular atrophy (SMA). Our goal is to create a bank of items that will ultimately be separated into shorter questionnaires based on age and function. In order to do this, we need to collect data on a large number of items, and from that data we will discard or modify items that aren’t relevant. You may feel like you are answering items that are too hard or too easy, or aren’t developmentally appropriate, but this information will allow us to create shorter forms in the future. You may be asked to answer more than one survey. You can complete the surveys all at once or over several days. The surveys make take you 10-20 minutes to complete, so breaks are encouraged. Let’s start by having you answer some questions about yourself as a person living with SMA, or the child or adult you care for with SMA.

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