RTI International: EARLY CHECK
RTI International, in partnership with the North Carolina State Laboratory of Public Health, the University of North Carolina at Chapel Hill, Duke University, and Wake Forest School of Medicine, is leading a research program to study outcomes related to screening newborns in North Carolina for rare disorders currently not on the Recommended Universal Screening Panel (RUSP). The Early Check (www.earlycheck.org) program is offering pregnant and new mothers across the state (over 120,000 newborns each year) the choice to have their newborn screened for a set of rare conditions. Parents learn about the program via a range of non-provider mediated recruitment efforts that are being evaluated sequentially, including direct mail and social media. Mothers provide electronic informed consent via the Early Check Research Portal. The electronic consent uses on-screen text, audio narration, videos, layered content, review questions, infographics and electronic signature. Negative results are provided via the Research Portal without direct communication with the research team, unless requested. Positive results are provided via phone, in-person, and telehealth. Early Check launches fall 2018.