RecruitingNot ApplicableNCT04393701

A Pilot Study for Systematic Neonatal Screening for Lysosomal Storage Diseases Using Tandem Mass Spectrometry


Sponsor

University Hospital, Rouen

Enrollment

100,000 participants

Start Date

Mar 8, 2021

Study Type

INTERVENTIONAL

Conditions

Summary

The study will include all newborns in Normandie region for 3 years (about 105,000 births) for whom signed consent by one (or two) parents will be collected. Based on our previous pilot study (2011) assessing MCAD and PKU using tandem mass spectrometry-based method in Normandie region in which informed consents have been signed for all newborns (43,000) but we are expecting a great willingness to participate to this project. Thus, we are aiming to include 100,000 newborns, and the study will be continued until we reach at least this target. The primary objective is to evaluate the epidemiology of MPS1 and Pompe disease using dried blood samples in the first cohort of neonates tested in France (Normandie region).


Eligibility

Min Age: 1 DayMax Age: 4 Days

Inclusion Criteria3

  • Newborn in a Normandy maternity hospital
  • Newborn participating in the National Neonatal Screening Program
  • Holder(s) of parental authority having read and understood the information letter and signed the informed consent form

Exclusion Criteria1

  • There are no criteria for non-inclusion in this study. Participation in the study, such as participation in the National Neonatal Screening Program, is not mandatory.

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Interventions

PROCEDUREAdditional blood sampling

Additional blood sampling on blotting paper will be done in neonates in Normandy, France, compared to National neonatal screening program


Locations(2)

Caen University Hospital

Caen, France

Rouen University Hospital

Rouen, France

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NCT04393701


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