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

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 a...

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Bibliographic Details
Published in:Journal of clinical epidemiology 1995-08, Vol.48 (8), p.1069-1076
Main Authors: Kozinetz, Claudia A., Skender, Martha L., Macnaughton, Nancy L., Del Junco, Deborah J., Almes, Mary Jane, Schultz, Rebecca J., Glaze, Daniel G., Percy, Alan K.
Format: Article
Language:English
Subjects:
Biological and medical sciences
Capture-Recapture methodology
Child
Epidemiology
General aspects
Humans
Linear Models
Log-linear modeling
Medical sciences
Methodology
Models, Statistical
Multidisciplinary
Nervous System Diseases - epidemiology
Pediatric neurologic disorders
Population Surveillance - methods
Population-based
Public health. Hygiene
Public health. Hygiene-occupational medicine
Registries
reporters
Rett Syndrome - epidemiology
Texas - epidemiology
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Summary: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.
ISSN:0895-4356
1878-5921
DOI:10.1016/0895-4356(94)00233-G