Methods to estimate access to care and the effect of interventions on the outcomes of congenital disorders

Congenital Disorders Expert Group, Hannah Blencowe, Sowmiya Moorthie, Matthew W. Darlison (Lead / Corresponding author), Stephen Gibbons, Bernadette Modell

Research output: Contribution to journalArticlepeer-review

8 Citations (Scopus)
121 Downloads (Pure)


In the absence of intervention, early-onset congenital disorders lead to pregnancy loss, early death, or disability. Currently, lack of epidemiological data from many settings limits the understanding of the burden of these conditions, thus impeding health planning, policy-making, and commensurate resource allocation. The Modell Global Database of Congenital Disorders (MGDb) seeks to meet this need by combining general biological principles with observational and demographic data, to generate estimates of the burden of congenital disorders. A range of interventions along the life course can modify adverse outcomes associated with congenital disorders. Hence, access to and quality of services available for the prevention and care of congenital disorders affects both their birth prevalence and the outcomes for affected individuals. Information on this is therefore important to enable burden estimates for settings with limited observational data, but is lacking from many settings. This paper, the third in this special issue on methods used in the MGDb for estimating the global burden of congenital disorders, describes key interventions that impact on outcomes of congenital disorders and methods used to estimate their coverage where empirical data are not available.

Original languageEnglish
Pages (from-to)363-376
Number of pages14
JournalJournal of Community Genetics
Issue number4
Early online date17 Mar 2018
Publication statusPublished - Oct 2018


  • Access to care
  • Congenital malformations
  • Estimation
  • Interventions
  • Pregnancy outcomes

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)


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