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Causes of death in Huntington disease as reported on death certificates

J L Haines, P M Conneally

    Genetic Epidemiology
    |January 1, 1986
    PubMed

    Insights

    Reporting of Huntington disease (HD) on death certificates is incomplete, affecting family history research and mortality rate accuracy. While improving, significant underreporting persists even in recent decades.

    Area of Science:

    • Neurology
    • Genetics
    • Public Health

    Background:

    • Huntington disease (HD) is a rare, inherited neurodegenerative disorder.
    • It is characterized by progressive motor, cognitive, and psychiatric dysfunction.
    • HD typically manifests in mid-adulthood.

    Purpose of the Study:

    • To assess the completeness of Huntington disease reporting on death certificates.
    • To evaluate trends in reporting accuracy over time.
    • To discuss the impact of reporting accuracy on research and statistics.

    Main Methods:

    • Analysis of 253 death certificates from four midwestern states.
    • Inclusion of individuals with confirmed Huntington disease.
    • Examination of primary and contributory cause of death entries.

    Main Results:

    • Only 66% of death certificates accurately listed Huntington disease.
    • Reporting improved in more recent death certificates.
    • Since 1979, 16% of certificates still failed to report HD.

    Conclusions:

    • Incomplete death certificate reporting of Huntington disease is a significant issue.
    • This underreporting impacts the accuracy of HD mortality statistics.
    • Improved reporting is crucial for epidemiological studies and family history research.

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