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The New England Regional Genetics Network at the University of NH is researching family experiences with newborn screening in New England. They are particularly interested in hearing from families who had a result on the newborn screening test (“heelstick”) which required additional testing, either with a repeat newborn screening heelstick or other testing by a medical professional. Even if no follow-up was required, they would love all families to complete their survey.
You must be at least 18 years old to participate. If you live in New England (CT, ME, MA, NH, RI, or VT), you can enter a drawing for one of six $50 gift cards once you complete the survey. It may take about 15 minutes. Your opinions are very important in helping us learn how to improve the experience for others. The survey is completely anonymous. Survey will close March 22.
If you have any questions contact [email protected]. This research has been approved by UNH IRB-FY2024-125.
The New England Regional Genetics Group was formed in order to serve as a consortium of genetics service providers, public health planners, consumer groups, and general and state maternal and child health personnel in New England. Its primary activities are to serve as a forum for the discussion of region-wide concerns regarding the provision of optimal services in clinical genetics and genetics education, and to undertake specific programs for the enhancement of genetics services in New England.