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Online Healthcare Network To Promote Data Sharing, Communication About Genetic Conditions

A team led by Genetic Alliance of Washington, D.C. will collaborate with 10 other disease advocacy organizations to build a health data network that will allow research participants greater control over the data they share with investigators and promote wider dissemination of information among the organizations. Funding for the initiative comes from the Patient-Centered Outcomes Institute (PCORI), and the network will be incorporated into PCORI’s National RESEARCH UPDATE Diagnostics, Inc. of San Jose, California markets its test for use among pregnant women at average-risk of prenatal abnormalities following a 2012 study of 2,049 average-risk women in the first trimester of pregnancy that found cffDNA tests identified trisomies 21 and 18 with a false-positive rate of 0.1%. That study was published after the survey by Indiana University researchers was conducted [Nicolaides et al., 2012]. Insurance coverage also factors into which women are offered cffDNA screening and how results are used, according to the survey. Slightly more than one-fourth of respondents reported that coverage affects how often they offer the test, and more than half expect that most patients will have insurance coverage for it. “Most insurance companies cover the test, but to different extents,” notes Nancy C. Rose, MD, Chair of ACOG’s Committee on Genetics, Director of Reproductive Genetics at Intermountain Healthcare, and Professor of Obstetrics and Gynecology at University of Utah in Salt Lake City.