Cure SMA and Parent Project Muscular Dystrophy (PPMD) are conducting two different surveys about clinical trial participation. The goal is to find out more about how the neuromuscular community—individuals and families affected by conditions like spinal muscular atrophy or muscular dystrophy—thinks about potential therapeutics and clinical trials.

All parents of children with SMA who live in the United States or Canada are eligible to participate. If you have questions on either of these surveys, please contact Jill at [email protected].

If your child has never been in a clinical trial:

We want to understand the reasons why people are not in clinical trials—whether it is because they choose not to; or don’t know much about clinical trials; or are waiting for the right clinical trial, or the right time, or the right inclusion criteria.

PLEASE TAKE THE SURVEY IF:

  • You are a parent of at least one living child with spinal muscular atrophy (SMA), and
  • You are at least 18 years old, and
  • Your child receives his/her spinal muscular atrophy care in the United States or Canada, and
  • Your child has never been in a clinical trial.*

This survey can be taken at http://tinyurl.com/trialSMA.

If your child has been in a clinical trial:

We invite you to share your experience here if your child has been in a clinical trial (a trial testing a possible new treatment).

PLEASE TAKE THE SURVEY IF:

  • You are a parent or legal guardian of an individual with spinal muscular atrophy (SMA), and
  • Your child is participating, or has participated, in a clinical trial in the United States or Canada within the past 10 years.*

This survey can be taken at http://tinyurl.com/SMAparent.
 
*When we say “clinical trial” we mean a study that tests a potential treatment in humans to see if it is safe and effective.