Table 3.
Demographic indicators—sources and time period covered by data
| Indicator | Use within estimates | Data source | Time-period covered by data |
|---|---|---|---|
| Population (1000 s) | Denominator for prevalence calculations per 100,000 population | UN WPP | 1950–2016 |
| Population age distribution | This provides a baseline for estimating present patient numbers | UN WPP | |
| Annual number of live births (1000 s) | Denominator for all rate calculations (e.g. affected births/1000 births)a | UN WPP | |
| Infant mortality rate (deaths under 1 year per 1000 births) | A basic indicator of health service development used for estimating access to health services and adjusting estimates of mortality and survival for all-cause mortality | UN WPP b | |
| Under-5 mortality rate (deaths before age 5 per 1000 births | Used for adjusting under-5 deaths due to congenital disorders for all-cause mortality | UN WPP b | |
| Total fertility rate (TFR) (estimated average births per woman based on current fertility) | Used in estimates for disorders whose prevalence is related to birth number (e.g. rhesus haemolytic disease of the newborn) | UN WPP | |
| Mean life expectancy (average both sexes) | Provides the basis for calculating years of life affected by congenital disorders (years of life lost, lived with disability or lived cured) | UN WPP | |
| Maternal age distribution | Proportion of mothers 35 or over is used in calculating potential birth prevalence of maternal-age-related chromosomal disorders | UN WPP | |
| Stillbirth rate | Used to estimate the contribution of congenital disorders to stillbirths | Blencowe et al. 2017 | 2000–2014 |
| Population neonatal mortality rate | Total neonatal mortality rates are the denominator for calculating the contribution of congenital disorders to country, regional and global neonatal mortality | UN-IGME | 1990–2013 |
| Prevalence of consanguineous marriage (coefficient of consanguinity) | Used for estimating birth prevalence and outcomes of single gene disorders and for adjusting estimated access to services based on infant mortality rate | Bittles and Black (2015) | |
| Early mortality due to HIV infection | Used for adjusting estimating access to services based on infant mortality rate | Institute for Health Metrics and Evaluation (IHME) (2015) | 1990–2013 |
UNWPP United Nations World Population Prospects(United Nations Population Division)
aPrevalences of congenital disorders are usually described per 10,000 births in congenital anomaly registries. MGDb uses rates n/1000 births because this is the commonest expression in the context of public health
bAnnual data from 1980, with methodology, is available from http://www.childmortality.org/