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Long-term follow-up of newborn screening patients
Susan A Berry1, Michele A Lloyd-Puryear, Michael S Watson
1Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota 55455, USA. berry002@umn.edu
Insights
Newborn screening advances enable better treatment strategies for screened conditions. This work establishes a foundation for national planning of common data sets for long-term follow-up of infants identified through newborn bloodspot screening.
Area of Science:
- Genetics
- Pediatrics
- Public Health
Background:
- Newborn screening technologies are evolving, enabling improved treatment strategies for identified conditions.
- Multiple federal initiatives support long-term follow-up assessments for children identified through newborn screening.
- Inborn errors of metabolism are a key focus for newborn bloodspot screening programs.
Purpose of the Study:
- To review pilot projects for systematic long-term follow-up of infants with inborn errors of metabolism.
- To establish a foundation for national planning of a common data set for long-term follow-up.
- To summarize initial projects from a national coordinating center work group.
Main Methods:
- Convening a National Coordinating Center Long-Term Follow-Up Data Collection Work Group.
- Reviewing pilot projects from Health Resources and Services Administration-sponsored Regional Genetics Collaboratives.
- Facilitating collaboration among federal agencies and regional partners.
Main Results:
- Pilot projects demonstrated progress in systematic long-term follow-up for screened infants.
- Identified needs and opportunities for a national common data set.
- Highlighted the importance of collaborative efforts in data collection.
Conclusions:
- A common data set is crucial for effective long-term follow-up of newbornscreened children.
- Continued collaboration is essential for advancing national newborn screening follow-up strategies.
- The reviewed projects provide a basis for future national planning and data standardization.
Abstract:
New technology in newborn screening permits clinicians to approach strategies for defining optimal treatments for newborn-screened conditions. The Health Resources and Services Administration Maternal and Child Health Bureau, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the Centers for Disease Control and Prevention have all established initiatives for long-term follow-up assessment of children identified after newborn screening. In October 2008, an inaugural meeting of the National Institute of Child Health and Human Development-sponsored National Coordinating Center Long-Term Follow-Up Data Collection Work Group brought together partners from Health Resources and Services Administration-sponsored Regional Genetics Collaboratives to review pilot projects undertaken to promote systematic long-term follow-up for children with inborn errors of metabolism identified by newborn bloodspot screening. Beginning with these projects, the goal of this meeting was to provide a foundation for national planning for a common data set to be used for long-term follow-up. This supplement summarizes these initial projects.
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