Announcement of Rare Metabolic Diseases in Systematic Newborn Screening: the Phenylketonuria Experience.

Not yet recruitingOBSERVATIONAL
Enrollment

80

Participants

Timeline

Start Date

April 30, 2024

Primary Completion Date

April 30, 2027

Study Completion Date

April 30, 2027

Conditions
Phenylketonuria
Interventions
BEHAVIORAL

socio-psychological questionnaire

ton collecte socio-demographic variable

BEHAVIORAL

revised event impact scale (IER-S)

22 items assessed on a scale of frequency from 0 (not at all) to 4 (extremely)

OTHER

Non directive interview

composed of a very broad opening sentence to encourage the parents' discourse

OTHER

Stern interview

54 questions to investigate the impact of the announcement and the parenthood construction

OTHER

semi-directive interview

to propose ideas for improving and harmonizing practices

Trial Locations (1)

75015

Hôpital Necker Enfants Malades, Paris

All Listed Sponsors
lead

Assistance Publique - Hôpitaux de Paris

OTHER

NCT06289348 - Announcement of Rare Metabolic Diseases in Systematic Newborn Screening: the Phenylketonuria Experience. | Biotech Hunter | Biotech Hunter