title: Population-based registries using multidisciplinary reporters: a method for the study of pediatric neurologic disorders.
abstract: 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.
authors.affiliation: Department of Pediatrics, Baylor College of Medicine, Houston, TX 77030, USA.
authors.forename: C A
authors.initials: CA
authors.lastname: Kozinetz
authors.forename: M L
authors.initials: ML
authors.lastname: Skender
authors.forename: N L
authors.initials: NL
authors.lastname: MacNaughton
authors.forename: D J
authors.initials: DJ
authors.lastname: del Junco
authors.forename: M J
authors.initials: MJ
authors.lastname: Almes
authors.forename: R J
authors.initials: RJ
authors.lastname: Schultz
authors.forename: D G
authors.initials: DG
authors.lastname: Glaze
authors.forename: A K
authors.initials: AK
authors.lastname: Percy
mesh_terms: D002648:Child; D006801:Humans; D016014:Linear Models; D015233:Models, Statistical; D009422:Nervous System Diseases / Q000453:epidemiology*; D011159:Population Surveillance / Q000379:methods*; D012042:Registries; D015518:Rett Syndrome / Q000453:epidemiology; D013781:Texas / Q000453:epidemiology