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  1. Population-based registries using multidisciplinary reporters : a method for the study of pediatric neurologic disorders.

    Article - En anglais

    Few registries are available for evaluating population differences for rare, newly, or ill-defined pediatric neurologic disorders.

    The purpose of this article is to present standard methodologies for establishing a population-based registry and evaluating the completeness of a registry's case ascertainment.

    The Texas Rett Syndrome Registry (TRSR) is used as a model.

    The combination of health care and education resources has identified approx. 89-100% of the Rett syndrome cases in Texas.

    Cases reported by non-physician sources, although older on average (10.7 vs 7.7 years of age), did not differ by other demographic characteristics from those reported by physicians.

    Non-physician health and education professionals participated with the TRSR at a significantly higher rate than physicians, 89 and 37% (p<0.05), respectively.

    Capture-recapture techniques, both two-sample and log-linear modeling, were used to quantitatively evaluate case ascertainment.

    Standardized national and international population-based registries could be the basis of an initiative to identify the etiology and perhaps preventive measures for pediatric neurologic disorders.

    Mots-clés Pascal : Système nerveux pathologie, Enfant, Méthodologie, Epidémiologie, Registre, Homme

    Mots-clés Pascal anglais : Nervous system diseases, Child, Methodology, Epidemiology, Register, Human

    Logo du centre Notice produite par :
    Inist-CNRS - Institut de l'Information Scientifique et Technique

    Cote : 95-0381467

    Code Inist : 002B30A01A1. Création : 01/03/1996.