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Related Experiment Videos

Mortality from human transmissible spongiform encephalopathies: a record linkage study.

Susanna Conti1, Maria Masocco, Virgilia Toccaceli

  • 1National Center of Epidemiology, Surveillance and Health Promotion, Istituto Superiore di Sanità, IT-00161 Rome, Italy.

Neuroepidemiology
|April 16, 2005
PubMed
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The Italian Creutzfeldt-Jakob (CJD) disease register effectively identifies human transmissible spongiform encephalopathy (TSE) cases. Relying solely on death certificates from ISTAT is unreliable due to significant misclassification.

Area of Science:

  • Neurology
  • Epidemiology
  • Public Health

Background:

  • Human transmissible spongiform encephalopathies (TSEs), including Creutzfeldt-Jakob disease (CJD), require accurate surveillance.
  • The Italian National Census Bureau (ISTAT) collects mortality data, while a dedicated CJD register also tracks cases.

Purpose of the Study:

  • To assess the Italian CJD register's effectiveness in detecting human TSE cases.
  • To compare CJD register data with ISTAT mortality data.

Main Methods:

  • Utilized record linkage to compare and integrate data from the CJD register and ISTAT death certificates (1993-1999).
  • Calculated integrated TSE mortality rates per million people per year.

Main Results:

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  • An integrated estimate identified 457 TSE deaths: 183 by both sources, 210 by CJD register alone, and 64 by ISTAT alone.
  • The average integrated mortality rate was 1.58 deaths per million annually, peaking at 2.13 in 1999.
  • ISTAT misclassification exceeded 50% from 1996 onwards.

    • Conclusions:

    • The Italian CJD register demonstrates good case ascertainment for human TSEs.
    • Sole reliance on ISTAT death certificates is insufficient for accurate TSE monitoring in Italy.
    • Improvements in case ascertainment likely contributed to observed increases in mortality rates.