title: [Value of registries in decision making in public health: the example of trisomy 21].
abstract: Registries of congenital malformations are excellent tools to evaluate public policies and practices in the field of antenatal screening. The analysis of the data shows that the global prevalence of trisomy 21 (T21) has increased regularly these last years, as expected from the increase in mean maternal age at conception. It has doubled in less than 10 years. The uptake rate of amniocentesis has also increased but not enough to help decrease the prevalence of T21 at birth. The policy of non-reimbursement of the fetal karyotype to women younger than 38, does not convince them not to have an amniocentesis, as a third of them have had a prenatal diagnosis in the class of age 35-37. This absence of financial support is responsible for a social inequity demonstrated by the data. Registries of congenital malformations are observation posts to survey the practices in the field of antenatal screening and diagnosis, area expanding quickly, and strickly controlled in France. Registries are also excellent tools to build-up population-based epidemiological studies.
authors.affiliation: INSERM SC 11, Registre des Malformations des Bouches-du-Rhône, Marseille, France.
authors.forename: S
authors.initials: S
authors.lastname: Aymé
mesh_terms: D000328:Adult; D003659:Decision Making, Organizational; D004314:Down Syndrome / Q000453:epidemiology*; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D008423:Maternal Age; D011159:Population Surveillance; D011247:Pregnancy; D011256:Pregnancy Outcome; D018566:Pregnancy, High-Risk; D011296:Prenatal Diagnosis / Q000191:economics / Q000379:methods; D011635:Public Health Administration; D012042:Registries