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According to the NIH, there are now genetic tests available for some 2,500 diseases, including those tests that can be directly purchased by consumers. Most tests do not require the approval of the Food and Drug Administration (FDA).
The registry, launched on 29 February, is meant to provide patients and health-care providers with a centralized repository for details on the myriad of disease-specific tests that are now available. The agency, which has been planning the registry for years, said it will be a resource for “all who are struggling to make sense of the complex world of genetic testing”.
Because the registry just launched, its contents are limited to entries that have been carried over from genetest.org, an NIH resource of medical-genetics information for health-care providers and researchers. The NIH is now asking for genetic-testing companies to submit to the registry on a voluntary basis.
The registry can be queried by...