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
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 95-0381467
Code Inist : 002B30A01A1. Création : 01/03/1996.