Actively Recruiting

Phase Not Applicable
Age: 1Day - 4Days
All Genders
NCT04393701

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

Led by University Hospital, Rouen · Updated on 2025-09-11

100000

Participants Needed

2

Research Sites

300 weeks

Total Duration

On this page

Sponsors

U

University Hospital, Rouen

Lead Sponsor

U

University Hospital, Caen

Collaborating Sponsor

AI-Summary

What this Trial Is About

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).

CONDITIONS

Official Title

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

Who Can Participate

Age: 1Day - 4Days
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • 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
Not Eligible

You will not qualify if you...

  • 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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Trial Site Locations

Total: 2 locations

1

Caen University Hospital

Caen, France

Actively Recruiting

2

Rouen University Hospital

Rouen, France

Actively Recruiting

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Research Team

S

Soumeya BEKRI, Pr

CONTACT

J

Julien BLOT

CONTACT

How is the study designed?

Study Type

INTERVENTIONAL

Masking

NONE

Allocation

NA

Model

SINGLE_GROUP

Primary Purpose

DIAGNOSTIC

Number of Arms

1

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