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COVID-19 is an emerging, rapidly evolving situation.
Long-Term Follow-Up Workgroup
A newborn screening (NBS) system that operates between an established public health infrastructure and a follow-up infrastructure includes seven basic functions: education, screening, follow-up, confirmatory testing and diagnosis, treatment/management, outcome assessment, and system quality assurance. The Southeast Genetics Collaborative conducted a regional needs assessment that revealed several gaps in the functioning of the NBS system and the degree to which each system addressed the seven NBS system functions. Among the gaps that were identified was the need to improve the long-term management of disorders detected by NBS. The Long-Term Follow-Up (LTFU) Workgroup was established to address the need to improve long-term care of patients identified with NBS disorders. Membership
Rani Singh, PhD, RD, Chair Resources/Activities
Selected Publications
Singh RH, Hinman AR. Newborn dried bloodspot screening: Long-term follow-up activities and information system requirements. Genet Med. Dec;12(12 Suppl):S261-6. 2010 PMID: 21150373 Singh RH, Hinman AR, Wild E. Building a model for a comprehensive newborn screening system long-term follow-up information system. Mol Genet and Metab, 2009. |
SERN Highlights
February 2021
2020 Annual Meeting for SERN/SERGG - July 16-18 in Asheville, NC The next annual SERN/SERGG meeting will be held July 16-18, 2020 at Renaissance Asheville Hotel in Asheville, NC. More information available on the SERGG website: http://sergg.org/ |
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