Phase
Condition
Holoprosencephaly
Neuronal Ceroid Lipofuscinoses (Ncl)
Treatment
Medical follow up
interview with HSS researcher
Qualitative and quantitative longitudinal exploration
Clinical Study ID
Ages < 28 All Genders
Study Summary
Eligibility Criteria
Inclusion
Inclusion Criteria:
For satisfaction study about the information & identification of determinants of acceptability :
Inclusion criteria for parents/legal guardians :
All future parents approached for whom the unborn child will be cared for in theparticipating maternity unit
At least one parent/legal guardian who physically received information about thestudy
Future parents/legal guardian who do not object to the use of their data
Parent(s) or legal guardian(s) affiliated to a social security system orbeneficiaries of such a system
For pGS-NBS :
Inclusion criteria for newborn :
All babies born in one of the participating centers
Newborn who are less than 28 days at the date of the collection of PGC1 blottingpaper
Inclusion criteria for parents/legal guardians
At least one biological parent who physically received information about the study
Parent(s) or legal guardian(s) who do not object to "conventional" NBS
At least one parent/legal guardian able to provide consent for testing the infant
Informed consent signed by at least one parent/legal guardian
Agreement of the second parent/legal guardian for testing the infant (unless he isunknown or loss of contact) obtained from the first parent/legal guardian if hiswritten informed consent has not been obtained
Parent(s) or legal guardian(s) affiliated to a social security system orbeneficiaries of such a system
Exclusion
Exclusion Criteria:
Non inclusion criteria for satisfaction studies and pGS-NBS :
Non-inclusion criteria for parents/legal guardians :
- Parent(s) or legal guardian(s) under legal protection (guardianship, tutorship) orto a court order
Study Design
Connect with a study center
CHU d'Angers
Angers, 49933
FranceSite Not Available
CHU Besançon
Besançon, 25000
FranceSite Not Available
CHU Dijon Bourgogne
Dijon, 21000
FranceActive - Recruiting
CHU Hôtel Dieu
Nantes, 44093
FranceSite Not Available
CHU Rennes - Hôpital Sud
Rennes, 35203
FranceSite Not Available
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