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

Academic Article


  • 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. © 1995.
  • Authors

    Published In

    Digital Object Identifier (doi)

    Author List

  • Kozinetz CA; Skender ML; Macnaughton NL; Del Junco DJ; Almes MJ; Schultz RJ; Glaze DG; Percy AK
  • Start Page

  • 1069
  • End Page

  • 1076
  • Volume

  • 48
  • Issue

  • 8