Since 2006, CRACMO coordinated a network including all the French hospitals taking care of children with rare esophageal diseases. CRACMO set up various documents for families and healthcare professionals as well as for national health authorities including patient pathway (PNDS in 2008), documents for emergency cares for Orphanet, as well as several documents and activities with the family support group AFAO. CRACMO also started a population base registry recording prospectively (since 2008) all new borns in France and oversea born with esophageal atresia (EA). It also performed several research programs both clinical research and preclinical including bio-engineering and social and human sciences.
More than 50 expertises are given every year for difficult and/or complicated cases: for each case a written advice is given both to professionnals and families. Also, difficult cases are refered for special procedure to CRACMO from both France and foreign countries. CRACMO is a co-founder of the international network on esophageal atresia since 2013 which is a multidisciplinary professional group aiming to promote best care research and dissimination of information. CRACMO organized the first world congres on esophageal atresia in Lille in 2010 and is co-organizing one international meeting every two years. CRACMO wrote recently a consensus on digestive and nutritional care in EA under the umbrella of European and North American societies of pediatric gastroenterology.
The CDH Lille network has been created in 2007 and is part of the national CDH network which is composed of 3 complementary and highly connected centers :
- Marseille (national database & surgical management)
- Paris (antenatal management & genetic assessment)
- Lille (postnatal management & longterm follow up)
The expertise of Lille Center is more specifically dedicated to the postnatal medical management. Persistent pulmonary hypertension (PPHN) is the main problem observed in most of the newborns with CDH. PPHN results in severe hypoxemia and right cardiac failure. Lille Center is involved in research in CDH-related PPHN. A large animal model (fetal sheep) has been implemented in the Departement of experimental research connected to the Lille reference center. New therapeutic strategies have been tested (norepinephrine, treprostinil, omega 3) in the animal and then applied in newborn with CDH. Innovative management protocol has been implemented and accredited by the national health agency.
Long term outcome (25 y) is also assessed at Lille through a large cohort of CDH infants (220 patients) created in 1992 (Cohort Nord-Pas de Calais area). A national registry is ongoing including the main information of the infants with CDH in france. Lille Center is member of the CDH Euro-Consortium.
The pediatric department has been appointed since 2017 as a national reference center for rare and severe intestinal disease (MaRDi) including a home parenteral nutrition program and an intestinal rehabilitation center.