Parent experiences of newborn screening for spinal muscular atrophy
Part of Brain & nervous system, Genetic & congenital clinical trials.
This study talks with parents about their feelings and experiences after their baby's newborn screening for spinal muscular atrophy (SMA), a rare genetic condition. It aims to understand how parents cope with the results, which can help improve support for families.
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 in the Grand Est or Nouvelle-Aquitaine regions of France.
- Your child received a positive or false-negative result from the newborn SMA screening.
- You are 18 years or older.
- You can speak and read French well enough to join a group discussion or one-on-one interview and fill out questionnaires.
- It has been at least 4 months since you were told about the newborn 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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