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The recent modifications of the French bioethics law, the therapeutic progress and the massive development of advanced genetic techniques (such Next-Generation Sequencing (NGS)) with a rapid decrease in costs imply to question the extension of Newborn Screening (NBS) to new actionable pathologies and the acceptable and relevant methods for its possible expansion. International studies are beginning to determine the potential place of NGS in NBS. In this perspective, the SeDeN project aims to fully assess the social acceptability of these issues by measuring the diversity and consistency of expectations of French health professionals, parents and public policy makers.
The SeDeN-p3 Study focuses on the opinions of parents. It aims to analyze the perception of parents in different situations: birth, early childhood, child screened in the framework of the national neonatal screening program, etc. The objective of this part is to study the understanding and expectations of parents in France regarding the extension of newborn screening as well as their preferences regarding its conditions (information, types of pathologies, screening methods, etc.).
Enrollment
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Ages
Volunteers
Inclusion criteria
All populations combined:
Be a parent or co-parent
Age of parent:
Live in metropolitan France
Have received information about the SeDeN-p3 Study
Understand the purpose of the SeDeN-p3 Study
Self-administered questionnaire:
Be able to read and answer a self-administered questionnaire in French
Have a child less than a week old
Have just giver birth in 1 of the partner maternity hospitals during the survey period
Parent or co-parent whose youngest child is between 1 week and 3 years old
Be part of the panel of the selected survey-sample firm
Semi-structured interviews
Can converse fluently in French
Accept to conduct a recorded interview
Have completed the entire questionnaire
Have a child under 5 years old (inclusive) with 1 of the following diseases :
Phenylketonuria
Congenital hypothyroidism
Congenital adrenal hyperplasia
Cystic fibrosis
Sickle cell disease
hearing loss
MCAD deficiency
glutaric aciduria type -1
isovaleric academia
LCHAD deficiency
carnitine deficiency
homocystinuria
leukinosis
tyrosinemia type 1
Have a child under 17 years old (inclusive), with 1 of following diseases:
Exclusion criteria
1,585 participants in 4 patient groups
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Data sourced from clinicaltrials.gov
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