Long-term follow-up to ensure quality care of individuals diagnosed with newborn screening conditions: Early experience in New England

Genetics in Medicine

Volumn 12, Issue 12 SUPPL, 2010, Pages

  Sahai, Inderneel ^a   Eaton, Roger B ^a   Hale, Jaime E ^a   Mulcahy, Eleanor A ^b,c   Comeau, Anne Marie ^a,b  

^a UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL   (United States)

^b Maine Department of Health and Human Services   (United States)

^c New England Newborn Screening Program   (United States)

Author keywords

comprehensive public health model; cystic fibrosis; hemoglobinopathies; long term follow up; metabolic disorders; newborn screening

Indexed keywords

ARTICLE; FOLLOW UP; HEALTH CARE QUALITY; HEALTH CARE SYSTEM; HUMAN; METABOLIC DISORDER; NEWBORN SCREENING; UNITED STATES;

CHILD; EVIDENCE-BASED MEDICINE; FOLLOW-UP STUDIES; GENETIC DISEASES, INBORN; HEALTH PLAN IMPLEMENTATION; HUMANS; INFANT; INFANT, NEWBORN; NEONATAL SCREENING; NEW ENGLAND; PUBLIC HEALTH PRACTICE; QUALITY ASSURANCE, HEALTH CARE;

EID: 78650788706     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e3181fe5d37     Document Type: Article

References (8)

1. National Newborn Screening and Genetics Resource Center, 2010. Available at: http://genes-r-us.uthscsa.edu/. Accessed July 30, 2009.
2. Components included in newborn screening follow-up in the US in 2010. Available at: http://www2.uthscsa.edu/nnsis/. Accessed July 30, 2009.
3. Newborn Screening Task Force Convened in Washington, DC, May 10-11, 1999. Serving the family from birth to the medical home. Pediatrics 2000: 106:383-427.
4. Association of Maternal and Child Health Programs. Newborn screening long-term follow-up assessment, 2007. Available at: http://www.amchp.org/ publications/ChildrensHealth/Documents/NBS-LTFU%20Assessment.pdf Accessed July 30, 2009.
5. Tuerck J, Dhondt JL, King P, et al (Clinical and Laboratory Standards Institute). Newborn screening follow up: approved guideline. Clinical and Laboratory Standards Institute document I/LA27-A. Wayne, PA: Clinical and Laboratory Standards Institute, 2006.
6. Atkinson K, Zuckerman B, Sharfstein JM, Levin D, Blatt RJR, Koh HK. A public health response to emerging technology: expansion of the Massachusetts Newborn Screening Program. Public Health Rep 2001;116: 122-131.
7. Hsu H-W, Zytkovicz TH, Comeau AM, et al. Spectrum of medium chain acyl-CoA dehydrogenase (MCAD) deficiency detected by newborn screening. Pediatrics 2008;121:e1108-e1114.
8. O'Sullivan BP, Zwerdling R, Dorkin HL, Comeau AM, Parad RB. Early pulmonary manifestation of cystic fibrosis in children with the AF508/ R117H-7T genotype. Pediatrics 2006;118:1260-1265.