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October 16, 2019

Design and Interpretation Considerations in Registry-Based Studies

Author Affiliations
  • 1Epidemiology Branch, National Institute of Environmental Health Sciences, Research Triangle Park, North Carolina
  • 2Gillings School of Global Public Health, Department of Epidemiology, University of North Carolina at Chapel Hill, Chapel Hill
JAMA Psychiatry. 2020;77(1):15-16. doi:10.1001/jamapsychiatry.2019.2234

Population-based health registries can be valuable resources for public health research, particularly for studying rare diseases and long-term health outcomes, where more traditional observational and experimental designs often have insufficient sample size or follow-up time to adequately address the research question(s) of interest. In this issue, Tith et al1 demonstrate the utility of one such health registry for asking questions that are difficult to answer using more traditional study designs. Using hospitalization records for Quebec, Canada, from 2006 to 2018, they found that women who had been hospitalized for bulimia nervosa had higher incidence rates of cardiovascular disease (CVD) and death than women without bulimia who had experienced a pregnancy-related hospitalization. This research highlights the potential strength of registry data for informing interventions to enhance public health. Here, we offer thoughts on how to design and interpret registry-based studies to enhance validity.

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    1 Comment for this article
    good for stratified sample, not random sample
    Archie Banterings |
    Registries are good for stratified samples, not random samples.

    For instance, asking whether bulimia is associated with CVD. It is important to note that registries have regional limitations because they tend to be grouped by regional factors. As an example of one of the biggest regional factors is rural vs. urban registry. There is a large disparity in substance abuse treatment in rural vs. urban areas.

    Registries are not good for random samples, such as what percent of the population has bulimia. I am sure that the Greater Los Angeles area has a higher than average rate
    of bulimia.

    The article states: "Population-based health registries can be valuable resources for public health research, particularly for studying rare diseases..."

    The concept of rare diseases leads to the possibility of re-identifying the individuals. The most famous case being the re-identification of Massachusetts Governor William Weld’s medical data within an insurance data set.

    This opens possibility of liability for the researchers. Just recently " Vermont Supreme Court Ruled Patient Can Sue Hospital and Employee for Privacy Violation." (See: https://www.hipaajournal.com/vermont-supreme-court-ruled-patient-can-sue-hospital-and-employee-for-privacy-violation/ )