Psychological Evaluation of the Parental Experience of Newborn Screening for Infantile Spinal Muscular Atrophy in the Grand Est and Nouvelle-Aquitaine Regions

Not yet recruitingOBSERVATIONAL
Enrollment

36

Participants

Timeline

Start Date

October 20, 2025

Primary Completion Date

October 20, 2026

Study Completion Date

October 20, 2026

Conditions
Spinal Muscular Atrophy (SMA)Spinal Muscular Atrophy Type I
Interventions
BEHAVIORAL

focus group discussions

"These sessions will address:~* emotional reactions to the disclosure of the result~* perceptions and representations of the disease and its treatment~* the impact on the parent-child relationship~* the lived experience of neonatal screening and the perception of the support provided"

BEHAVIORAL

Interview with the psychologist

"These sessions will address:~* emotional reactions to the disclosure of the result~* perceptions and representations of the disease and its treatment~* the impact on the parent-child relationship~* the lived experience of neonatal screening and the perception of the support provided"

All Listed Sponsors
lead

University Hospital, Strasbourg, France

OTHER

NCT07208903 - Psychological Evaluation of the Parental Experience of Newborn Screening for Infantile Spinal Muscular Atrophy in the Grand Est and Nouvelle-Aquitaine Regions | Biotech Hunter | Biotech Hunter