Exploring barriers to long-term follow-up in newborn screening programs

  title={Exploring barriers to long-term follow-up in newborn screening programs},
  author={T. van 't Hoff and Adrienne T Hoyt and Brad Therrell and M Rose Ayoob},
  journal={Genetics in Medicine},
Purpose: To inform current policy debate regarding the public health role in long-term follow-up for individuals with disorders identified through state newborn testing efforts, by identifying and assessing key challenges, quality assurance activities, and long-term follow-up perceptions of state newborn screening programs.Methods: A 23-question, web-based survey sent to newborn screening programs in all 50 states and Washington, DC, during January and February, 2005.Results: Many U.S. newborn… CONTINUE READING

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