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Comparison of changes in neural tube defect prevalence in relation to primary prevention strategies: public health policy-making and implementation

Obiettivo

Objectives:

- To investigate the reasons why different countries within and outside the E.C. working from the same published data, adopted different policies (or none) regarding the primary prevention of Neural Tube Closure (NTD) by the use of folic acid
- To determine the extent to which such policies are being implemented
- To determine time trends in NTD prevalence in the same countries during the period likely to be influenced by such policies (or absence of policy)
- To determine whether different strategies have been associated with different time trends in NTD prevalence

Brief description:
In countries where termination of pregnancy for birth defect is legal, prenatal diagnosis has resulted in a sensible reduction of the birth prevalence of the defects of neural tube closure (NTD): anencephaly and spina bifida. This approach is often referred to as 'secondary prevention', but it is the birth not the birth defect which is prevented. Recently, evidence from several studies in different countries has shown that either multivitamins or folic acid alone, if taken by women shortly (4 weeks) before and during early pregnancy (the first 6 weeks), will substantially reduce the risk of NTD, both in women at high risk (by virtue of having had a previous affected child) or at the risk applying to the relevant population. This is primary prevention. Countries inside and outside Europe have adopted and promulgated different policies or public awareness concerning the possible NTDs prevention by diet and/or the use of vitamin preparations for women planning to become pregnant. The European dimension here will be to compare policy-making and decision-taking mechanisms on this specific issue, to identify national factors which led to a diversity of conclusions based on the same scientific data, to compare data on impact, including with those from the pilot country in the field: the USA.
Participants are members of an international network of birth defects registries: the International Clearinghouse for Birth Defects Monitoring Systems, coordinated by the International Center for Birth Defects (ICBD) in Rome. The achievement of the project will be based on standardized interviews of the people directly involved in national decision-making on this issue and on folate awareness field-studies (at the beginning and the end of the covered period of investigation), both conducted in each participating countries, and NTDs data collection on livebirths, stillbirths and pregnancy terminations for NTD recorded in the participating area for the period likely to be influenced by such policies.
Keywords:
Neural tube defects, registries, primary prevention, folic acid, folic acid supplementation, policy-making, decision-making, public heath, evaluation, pregnancy.

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INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
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