NIH Building a Genetic Test Registry
The National Institutes of Health is developing a voluntary nationwide registry to house genetic laboratory tests.
Tests for more than 2,000 genetic conditions are available, but there is no centralized public source for clinicians, consumers, researchers and others to tap into that data and learn about the availability and scientific basis for the tests, NIH explains in a notice published July 27 and available here.
"The Genetic Testing Registry will provide a centralized, online location for test developers, manufacturers and researchers to submit detailed information about genetic tests," the notice states. "The overarching goal of the GTR is to advance the public health and research in the genetic basis of health and disease."
HIN asks submitters to update their test information at least annually, and submissions from other nations are welcome. The registry will include 31 minimal fields to be filled and 85 optional fields. Submitters of large numbers of tests will be able to use a bulk upload feature.