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 purpo se of this article is to present standard methodologies for establishi ng a population-based registry and evaluating the completeness of a re gistry's case ascertainment. The Texas Rett Syndrome Registry (TRSR) i s used as a model. The combination of health care and education resour ces 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 charact eristics from those reported by physicians. Non-physician health and e ducation professionals participated with the TRSR at a significantly h igher rate than physicians, 89 and 37% (p < 0.05), respectively. Captu re-recapture techniques, both two-sample and log-linear modeling, were used to quantitatively evaluate case ascertainment. Standardized nati onal and international population-based registries could be the basis of an initiative to identify the etiology and perhaps preventive measu res for pediatric neurologic disorders.