Condition: Phenylketonuria · Sponsor: Assistance Publique - Hôpitaux de Paris
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.
This description comes directly from the study's public registry record.
Pascale DELONLAY, MD, PhD · +33 1 44 49 48 52 · pascale.delonlya@aphp.fr
Aminata TRAORE · +33 1 42 19 27 34 · aminata.traore6@aphp.fr
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| Hôpital Necker Enfants Malades | Paris, France | Recruiting |
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Source record: clinicaltrials.gov/study/NCT06289348