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Reliability of statistics on Down's syndrome notifications
1Department of Environmental and Preventive Medicine, Wolfson Institute of Preventive Medicine, St Bartholomew's and the Royal London School of Medicine and Dentistry, United Kingdom.
Journal of Medical Screening
|January 1, 1997
Summary
Notifications of Down
Area of Science:
- Medical Genetics
- Public Health Surveillance
Background:
- Accurate surveillance of Down's syndrome births and terminations is crucial for public health.
- The Office for National Statistics (ONS) collects data on these events.
- The National Down Syndrome Cytogenetic Register (NDSCR) provides a specialized dataset.
Purpose of the Study:
- To assess the completeness of Down's syndrome live birth and termination notifications to the ONS.
- To compare observed Down's syndrome birth prevalence with expected rates based on maternal age.
Main Methods:
- Comparison of NDSCR data with ONS reported figures for live births and terminations.
- Calculation of expected Down's syndrome live birth prevalence using maternal age-specific rates (1990-1993).
- Validation against published age-specific prevalence data.
Main Results:
- Only 48% of Down's syndrome live births and 46% of terminations were notified to ONS (1990-1993).
- Calculated expected birth prevalences closely matched observed NDSCR rates.
- Significant underreporting to ONS was identified.
Conclusions:
- Substantial underreporting of Down's syndrome events to the ONS exists.
- NDSCR data offers a more complete source for monitoring screening program effects.
- Estimates derived from age-specific rates are a viable alternative for surveillance.