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.
Rani Singh, PhD, RD, Chair
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 Lunch and Learn Announcement Wed, October 24th 2018
Please join us on
Wednesday, October 24that 12:00 pm (noon) at the
7th Floor Conference Room
Woodruff Memorial Research Building
101 Woodruff Circle
SERN Lunch and Learn Series.
A flyer is attached for your review.
Our speaker will be:
Allison Foley, MMSc, CGC
Certified Genetic Counselor
Lysosomal Storage Disease Center
Emory Department of Human Genetics
The title of her presentation is:
“Pompe Disease: Newborn Screening and Georgia Pilot Program Experience.”
Pizza will be provided
Please RSVP by Friday, October 19thto firstname.lastname@example.org
Live presentation via internet is available to a limited number of sites.
Email email@example.com for web reservations.