Parents' experience of newborn screening for SMA
Part of Brain & nervous system, Genetic & congenital clinical trials.
This study talks to parents whose newborns had a screening test for spinal muscular atrophy (SMA) in two French regions. The goal is to understand how parents experienced that screening process—good or bad—so hospitals can improve how they share results.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You are the parent of a child who was part of the DEPISMA study and born in the Grand Est or Nouvelle-Aquitaine region of France.
- Your child's newborn screening result for spinal muscular atrophy (SMA) was positive or a false-negative (meaning the result was wrong).
- You are at least 18 years old.
- You speak and read French well enough to take part in a group discussion or interview and fill out questionnaires.
- At least 4 months have passed since you received the screening result.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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