Latest database descriptions

The public health objectives of this registry are to:
- evaluate the incidence and prevalence of the disease
- determine the risk factors of the disease manifesting and the possible prevention means
- evaluate death rates in the population
- The incidence and prevalence of long-term sequelae of this disease (pituitary affects – sclerosing cholangitis – respiratory failure – neurological and psychiatric problems) and to evaluate prevention methods
- Evaluate the impact of therapies on the long-term progression of the disease - particularly mortality - and long-term sequelae
- Enable the implementation of basic biological research on broad samples of patients whose progressive profiles have been determined. Such studies have two objectives: The determination of factors for the disease manifesting and the improvement of determining factors of the disease's progression - particularly the sequelae.

1) Health surveillance: the main objective is to evaluate the incidence of CNS primitive tumors from exhaustive and continuous cases recording, to study cases distribution by age and sex, for different histologic types in order to compare this incidence to national data, and study geographic and temporal variations of this incidence.
2) Epidemiological research: other objectives are to further research in the CNS primitive tumors etiology domain through risk factors research, case-control epidemiological studies on general population about the role of intrinsic and extrinsic factors, which are environmental and professional factors such as pesticides, electromagnetic fields, solvents, nitrosamines or petroleum products. Moreover, we will have the possibility to cross epidemiological and biological data allowing to research biological factors of vulnerability to environmental agents exposition.
3) Participate to the evaluation of therapeutic care: knowledge of the health care networks and caring periods, as well as health care activities indicators surveillance (biopsy rates, anatomo-pathologies practices, diagnosis circumstances) are other long-term objectives of Gironde CNS tumor register. A first approach has begun by a systematic follow-up of the vital status and death causes of patients suffering by these pathologies.

- evaluate the behaviors at risk for the health of students from Upper Normandy,
- evaluate the impact of preventive actions with the change in behavior of these students,
- identify the periods at risk during the university curriculum,
- identify the university orientations that are most sensitive to the development of risks for health.

1. Carry out epidemiological surveillance of congenital abnormalities in the population of Reunion Island (determination of prevalence and distribution) and identification of malformation risk factors (genetic, environmental, related to drugs or toxins); with the purpose of sounding the alert when any environmental teratogenic agents become evident (e.g. drug, pesticide exposure, industrial accident) at local, national and international level. Should clusters of malformations be detected (surveillance-alert of an increase in prevalence over time of a given malformation), checks must be made regarding recording bias before conducting further investigations. Then specific risk factors will be sought.

2. Evaluate the impact of public health initiatives in the population:
- Evaluation of prenatal screening of malformations is a fundamental objective for the registry, with participation in the field of perinatal medicine and local obstetric practices

- Implementation and evaluation of prevention initiatives are also important, such as the primary prevention of neural tube closing defects via folic acid supplements before conception.

2. Identification of possible new syndromes and supply of new information for genetic counseling of families. e-transmission method, genetic heterogeneity, genetic susceptibility factor.