Status:
NOT_YET_RECRUITING
Psychological Evaluation of the Parental Experience of Newborn Screening for Infantile Spinal Muscular Atrophy in the Grand Est and Nouvelle-Aquitaine Regions
Lead Sponsor:
University Hospital, Strasbourg, France
Conditions:
Spinal Muscular Atrophy (SMA)
Spinal Muscular Atrophy Type I
Eligibility:
All Genders
18+ years
Brief Summary
The systematic inclusion of spinal muscular atrophy (SMA) in France's neonatal genetic screening (NGS) program, scheduled for September 2025, represents a major milestone in public health. While this ...
Eligibility Criteria
Inclusion
- Be the parent of a child included in the DEPISMA study, born in the Grand Est or Nouvelle-Aquitaine region;
- Have received a positive or false-negative result from the neonatal SMA screening;
- Be an adult at the time of inclusion;
- Be proficient in French in order to participate in a focus group or an individual interview, and to complete the self-administered questionnaires;
- Have been informed of the NNS result for at least 4 months, to allow sufficient time for a subjective reflection
Exclusion
- Parent who is not sufficiently proficient in French to participate in focus groups or complete questionnaires
- Death of the child who was screened
Key Trial Info
Start Date :
October 20 2025
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
October 20 2026
Estimated Enrollment :
36 Patients enrolled
Trial Details
Trial ID
NCT07208903
Start Date
October 20 2025
End Date
October 20 2026
Last Update
October 6 2025
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