Practices and perceptions of long-term follow-up among state newborn screening programs

Pediatrics

Volumn 117, Issue 6, 2006, Pages 1922-1929

  Hoff, Timothy ^a   Hoyt, Adrienne ^a  

^a STATE UNIVERSITY OF NEW YORK   (United States)

Author keywords

Follow up; Health policy; Newborn screening; Newborn screening programs; Public health

Indexed keywords

ARTICLE; CLINICAL PRACTICE; CONTROLLED STUDY; FOLLOW UP; HEALTH CARE COST; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH PROGRAM; HEALTH SERVICE; HEALTH SURVEY; HUMAN; NEWBORN SCREENING; PERCEPTION; PRIORITY JOURNAL; QUALITY CONTROL; QUESTIONNAIRE; COST; ECONOMICS; HEALTH CARE QUALITY; NEWBORN; ORGANIZATION AND MANAGEMENT; STANDARD; TIME; UNITED STATES;

COSTS AND COST ANALYSIS; FOLLOW-UP STUDIES; HUMANS; INFANT, NEWBORN; NEONATAL SCREENING; PERCEPTION; QUALITY ASSURANCE, HEALTH CARE; QUESTIONNAIRES; TIME FACTORS; UNITED STATES;

EID: 33745321363     PISSN: 00314005     EISSN: 02105721     Source Type: Journal    
DOI: 10.1542/peds.2005-1830     Document Type: Article

References (18)

1. Dodd CJ, DeWine M. Newborn Screening: Characteristics of State Programs. Washington, DC: US General Accounting Office; 2003
2. Saxena A. Issues in newborn screening. Genet Test. 2003;7:131-134
3. McCabe LL, Therrell BL Jr, McCabe ERB. Newborn screening: rationale for a comprehensive, fully integrated public health system. Mol Genet Metab. 2002;77:267-273
4. Waisbren SE, Albers S, Amato S, et al. Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress. JAMA. 2003;290:2564-2571
5. Maternal and Child Health Bureau. Newborn screening: toward a uniform screening panel and system, 2004. Available at: ftp://ftp.hrsa.gov/mchb/ genetics/screeningdraftforcomment.pdf. Accessed April 10, 2005
6. Wright L, Brown A, Davidson-Mundt A. Newborn screening: the miracle and the challenge. J Pediatr Nurs. 1992;7:26-42
7. Clayton EW. Issues in state newborn screening programs. Pediatrics. 1992;90:641-646
8. Khoury MJ, McCabe LL, McCabe ERB. Population screening in the age of genomic medicine. N Engl J Med. 2003;348:50-58
9. American College of Obstetricians and Gynecologists. Committee Opinion Number 287: Newborn Screening. Washington, DC: American College of Obstetricians and Gynecologists; 2003
10. Therrell BL Jr. US newborn screening policy dilemmas for the twenty-first century. Mol Genet Metab. 2001;74:64-74
11. American Academy of Pediatrics, Newborn Screening Task Force. Serving the family from birth to the medical home: newborn screening: a blueprint for the future. Pediatrics. 2000;106(suppl):383-427
12. Mandl KD, Feit S, Larson C, Kohane IS. Newborn screening program practices in the United States: notification, research and consent. Pediatrics. 2002;109:269-273
13. Stoddard JJ, Ferrell PM. State-to-state variations in newborn screening policies. Arch Pediatr Adolesc Med. 1997;151:561-564
14. Kim S, Lloyd-Puryear MA, Tonniges TF. Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics. 2003;111:120-126
15. Carreiro-Lewandowski E. Newborn screening: an overview. Clin Lab Sci. 2002;15:229-238
16. National Newborn Screening and Genetics Resource Center. National Newborn Screening Report, 2000: Final Report: February 2003. Austin, TX: National Newborn Screening and Genetics Resource Center; 2003
17. National Newborn Screening and Genetics Resource Center. Newborn Screening Programs in the U.S., February 2005. Austin, TX: National Newborn Screening and Genetics Resource Center; 2005
18. Clinical and Laboratory Standards Institute. Newborn Screening Follow-Up: Proposed Guideline. Clinical and Laboratory Standards Institute document I/LA27-P. Wayne, PA: Clinical and Laboratory Standards Institute; 2005