Announcement of Rare Metabolic Diseases in Systematic Newborn Screening: the Phenylketonuria Experience.
Announcement of Rare Metabolic Diseases as Part of Systematic New-born Screening: the Experience of Phenylketonuria.
Assistance Publique - Hôpitaux de Paris
80 participants
May 7, 2024
OBSERVATIONAL
Conditions
Summary
The aims of this collaborative, interdisciplinary research project are to understand and describe the psychological impact of the announcement of a rare, serious disease present since birth and detected in the context of the systematic neonatal screening (DNS), in terms of the parents' experience, but also on the part of the medical team, in order to improve its process and the support it provides for the announcement of the diagnosis.
Eligibility
Plain Language Summary
Simplified for easier understanding
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Interventions
ton collecte socio-demographic variable
22 items assessed on a scale of frequency from 0 (not at all) to 4 (extremely)
composed of a very broad opening sentence to encourage the parents' discourse
54 questions to investigate the impact of the announcement and the parenthood construction
to propose ideas for improving and harmonizing practices
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT06289348