National Genetic and Birth Defects Registry makes great strides

As part of Saudi Arabia’s efforts to ensure that its citizens receive quality, accessible health care, the National Genetic and Birth Defects Registry (NGBDR) is building a national registry of genetic disorders, birth defects and developmental disabilities for the Kingdom.

Established in 2003, the registry program is funded by the Prince Salman Center for Disability Research in cooperation with the King Faisal Specialist Hospital and Research Center.

The registry program seeks to identify the prevalence of genetic disorders, birth defects and developmental disabilities in the Kingdom in addition to the distribution of patients according to tribal origin and location. It then aims to combine that information into a single database that can be accessed by the Kingdom’s health care system.

The database is expected to enrich medical research and assist in population health planning and the allocation of medical resources.

By 2007, the program plans to include all Gulf Cooperation Council (GCC) countries into one integrated registry.

More information is available about the program on its web site at www.ngbdr.org.sa.

The Saudi Embassy in Washington posts this press release about an organization established to track genetic diseases and birth defects in the population. Due both to a preference for marriages among closely-related family members—with first cousins seen as the ideal match—and the historic insularity of the bulk of the Saudi population, genetic diseases and inherited medical conditions present very real problems. This program supplements efforts to provide genetic pre-marital counseling in an effort to avoid marriages that carry a high risk of genetic defects in children.

The research center’s website does not include much useful information for the casual browser, unfortunately.