Serving the family from birth to the medical home: A report from the newborn screening task force convened in Washington DC, May 10-11, 1999: Preface

Pediatrics

Volumn 106, Issue 2 II, 2000, Pages 383-427

  Fox, Claude Earl ^a   Lloyd Puryear, Michele A ^b   Mann, Marie ^b  

^a HRSA ^*  (United States)

^b HRSA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CONFERENCE PAPER; CONGENITAL MALFORMATION; COST EFFECTIVENESS ANALYSIS; DEMOGRAPHY; DNA DETERMINATION; GENETIC SCREENING; GENOME; HUMAN; INFANT; MASS SCREENING; NEWBORN; NEWBORN SCREENING; PHENYLKETONURIA; PRIORITY JOURNAL; SCREENING TEST; TANDEM MASS SPECTROMETRY;

HUMANS; INFANT, NEWBORN; NEONATAL SCREENING; PEDIATRICS; PRACTICE GUIDELINES; SOCIETIES, MEDICAL; UNITED STATES; UNITED STATES HEALTH RESOURCES AND SERVICES ADMINISTRATION;

EID: 0033844765     PISSN: 00314005     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Conference Paper

References (219)

1. Newborn screening for congenital disorders
2. Newborn screening: The miracle and the challenge
3. Neonatal screening for sickle cell disease: A cost-effectiveness analysis
4. Economic evaluation of cost-benefit ratio of neonatal screening procedure for phenylketonuria and hypothyroidism
5. A comparative cost analysis of newborn screening for classic congenital adrenal hyperplasia in Texas
6. US newborn screening systems guidelines. Statement of the council of regional networks for genetic services
7. Results of screening 1.9 million Texas newborns for 21-hydroxylase-deficient congenital adrenal hyperplasia
8. U.S. newborn screening system guidelines II: Follow-up of children, diagnosis, management, and evaluation
9. Principles of newborn screening for metabolic disease
10. Postrelational database implementation for newborn screening and tracking
11. What drives neonatal screening programs?
12. Newborn screening perspective
13. A simple phenylalanine method for detecting phenylketonuria in large populations of newborn infants
14. The history of newborn phenylketonuria screening in the US
15. Mandatory PKU screening: The other side of the looking glass
16. Symposium: Legal and ethical issues raised by human genome project, screening and treatment of newborns
17. Genetic services in the United States
18. Computerized surveillance of errors in newborn screening practice
19. Pacific northwest regional newborn screening: A paradigm of prevention
20. Proposed guidelines for screening of metabolic and endocrine diseases of dependent neonates of the US Armed Forces. Derived from a survey of state guidelines for neonatal screening of metabolic diseases
21. Universal newborn hearing screening - The Colorado story
22. Newborn and infant hearing loss: Detection and intervention
23. Universal screening for infant hearing impairment: Simple, beneficial, and presently justified
24. The constitutionality of mandatory genetic screening statutes
25. State screening for metabolic disorders in newborns
26. State-to-state variations in newborn screening policies
27. Is universal neonatal hemoglobinopathy screening cost-effective?
28. Sickle cell guidelines stress screening
29. Universal versus targeted screening of infants for sickle cell disease: A cost-effectiveness analysis
30. Newborn screening for sickle cell disease and other hemoglobinopathies
31. Genetic screening and haemoglobinopathies: Ethics, politics and practice
32. Race and the new genetics: A historical perspective
33. Update: New guidelines for the treatment of infants with sickle cell disease. Agency for health care policy and research
34. Ethical and legal implications of the new genetics: Issues for discussion
35. Newborn screening fact sheets
36. Newborn screening fact sheets
37. Annual summary of vital statistics - 1998
38. Group identity and human diversity: Keeping biology straight from culture
39. Screening for congenital hearing impairment: Time for a change
40. HIV testing of infants: Privacy and public health
41. Expanding the newborn screen: Terrific or troubling?
42. Genetic screening: Triumphs, problems, and controversies
43. Screening policy for cystic fibrosis. The role of evidence
44. The need for a national policy for the management of inherited metabolic disease
45. Neonatal screening: Current trends and quality control in the United Kingdom
46. Population newborn screening for inherited metabolic disease: Current UK perspectives
47. Newborn screening by tandem mass spectrometry: A new era
48. Reflections on the cost consequences of the new gene technology for health policy
49. Tandem spectrometry in newborn screening
50. Use of phenylalanine-totyrosine ratio determined by tandem mass spectrometry to improve newborn screening for phenylketonuria of early discharge specimens collected in the first 24 hours
51. New goals for the US Human Genome Project: 1998-2003
52. Ryan white care act requirement - Secretary's determination on HIV testing of newborns. Notice and request for comments
53. The medical home
54. Population studies of allele frequencies in single gene disorders: Methodological and policy considerations
55. Current approaches to genetic metabolic screening in newborns
56. Ethical dimensions in genetic screening: A look into the future
57. The impact of the federal cutback on genetic services
58. The changing US health care system: Challenges for responsible public policy
59. Newborn screening for inborn errors of metabolism: A systematic review
60. Testimony before the Ohio Senate Health, Human Services, and Aging Committee
61. Dietary treatment of inborn errors of metabolism
62. Newborn screening: A potpourri of policies
63. Issues in state newborn screening programs
64. Issues of social policy and ethics in gene technology
65. National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis
66. Universal newborn screening for hearing loss: Ideal vs. reality and the role of otolaryngologists
67. Sometimes sensitive, seldom specific: A review of the economics of screening
68. Recommendations for screening priorities in Australasia
69. The status of state-wide policies for neonatal hearing screening
70. Genetic screening and public health
71. Newborn screening in the 80's - The automation of follow-up
72. Newborn screening
73. Infant metabolic screening: A total quality management approach
74. Monitoring and measuring community-based integrated systems of care
75. Laboratory screening for genetic disorders and birth defects
76. Computer assisted management of a regionalized newborn screening program
77. Neonatal screening for inborn errors of metabolism: Cost, yield and outcome
78. Sickle cell screening policies as portent: How will the human genome project affect public sector genetic services?
79. A decade of screening in the hemoglobinopathies: Is a national program to prevent sickle cell anemia possible?
80. Cost-effectiveness of neonatal screening for sickle cell disease
81. Cost analysis of TEOAE-based universal newborn hearing screening
82. A scientific basis for cost-benefit analysis of genetics services
83. Justifying prenatal screening and genetic amniocentesis programs by cost-effectiveness analyses: A re-evaluation
84. Costs and benefits of prenatal screening for cystic fibrosis
85. Newborn hypothyroid screening. The private sector
86. Prenatal and newborn screening: State legislative approaches and current practice standards
87. Antenatal screening for hepatitis B infection and syphilis in the UK
88. Perspectives on a state enacted hearing screening assessment program in the newborn population
89. Guidelines for the audiologic assessment of children from birth through 36 months of age
90. Identification of hearing loss in infants
91. The Rhode Island Hearing Assessment Program
92. Newborn hearing screening
93. Early hospital discharge and the timing of newborn metabolic screening
94. Positive effects of prenatal and early childhood interventions
95. Phenylketonuria screening: Effect of early newborn discharge
96. Home visiting: Recent program evaluations - Analysis and recommendations
97. Effect of prenantal and infancy home visitation by nurses on pregnancy outcomes, childhood injuries, and repeated childbearing: A randomized controlled trial
98. Improving the life chances of children in poverty: Assumptions and what we have learned
99. Transition for neonatal intensive care unit: Putting it all together in the community
100. Long-term follow-up of infants discharged from neonatal intensive care units
101. Babies at double hazard: Early development of infants at biological and social risk
102. A longitudinal study of two early intervention strategies: Project CARE
103. CSTE Survey
104. Congenital malformations surveillance report: A report from the National Birth Defects Prevention Network
105. Preventive health care for young children: Findings from a 10-country study and directions for United States policy
106. Public health and primary care: A framework for proposed linkages
107. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing
108. Newborn screening for hemoglobinopathies in New York State: Experience of physicians and parents of affected children
109. The genetic revolution and the physician's duty of confidentiality. The role of the old Hippocratic virtues in the regulation of the new genetic intimacy
110. Legal and ethical issues in newborn screening
111. The pediatrician's role in community pediatrics
112. Computerized tracking for newborn screening and follow-up: A review
113. Audit of neonatal screening programme for phenylketonuria and congenital hypothyroidism
114. Neonatal screening for cystic fibrosis: Position paper
115. Issues in newborn screening
116. Scope of health care benefits for newborns, infants, children, adolescents, and young adults through age 21 years
117. The medical home statement addendum: Pediatric primary health care
118. Newborn screening: Principles and practice
119. Public participation in medical policy-making and the status of consumer autonomy: The example of newborn-screening programs in the United States
120. Genetic counseling
121. Utilization of a questionnaire to provide follow-up services in an infant hearing screening program
122. ASHG report. Statement on informed consent for genetic research
123. Storage of Genetics Materials Committee: ACMG Statement. Statement on storage and use of genetic materials
124. Genetic screening and ethics: European perspectives
125. A survey to evaluate parental consent as public policy for neonatal screening
126. The social dynamics of genetic testing: The case of Fragile X
127. Contesting consent: The challenge to compulsory neonatal screening for PKU
128. Factors which influence the rate of receiving a routine second newborn screening test in Washington State
129. State health agencies and quality improvement in perinatal care
130. Newborn screening for cystic fibrosis: A paradigm for public health genetics policy development. Proceedings of a 1997 workshop
131. HIV screening of newborns
132. Genetic testing and public policy
133. Screening for genetic diseases
134. Neonatal screening for metabolic diseases - A task without priority in the Norwegian health policy? (Norwegian)
135. Screening of newborn infants for cholestatic hepatobiliary disease with tandem mass spectrometry
136. Neonatal screening for cystic fibrosis
137. Beta-thalassemia disease prevention: Genetic medicine applied
138. Guidelines for the retention, storage, and use of residual dried blood spot samples after newborn screening analysis: Statement of the Council of Regional Networks for Genetic Services
139. Informed consent for genetic research on stored tissue samples
140. Evaluating newborn screening programmes based on dried blood spots: Future challenges
141. Stored Guthrie cards as DNA 'blanks'
142. Use of Guthrie cards for the early diagnosis of neonatal herpes simplex virus disease
143. Anonymous testing of newborn infants for HIV antibodies as a basis for estimating prevalence of HIV in childbearing women: The 1991-1994 study in Spain
144. Maternal vitamin use, genetic variation of infant methylenetetrahydrofolate reductase, and risk for spina bifida
145. Preliminary investigation of the use of dried-blood spots for the assessment of in utero exposure to environmental pollutants
146. Population-based prevalence of perinatal exposure to cocaine - Georgia, 1994
147. Protecting the weakest link: A proposal for universal, unblinded pediatric HIV testing, counselling and treatment
148. Pediatric HIV disease, zidovudine in pregnancy, and unblinding heelstick surveys. Reframing the debate on prenatal HIV testing
149. The role of folate transport and metabolism in neural tube defect risk
150. Association study of transforming growth factor alpha (TGF alpha) TaqI polymorphism and oral clefts: Indication of gene-environment interaction in a population-based sample of infants with birth defects
151. What should be the role of public health in newborn screening and prenatal diagnosis?
152. Generic consent for genetic screening
153. A model agreement for genetic research in socially identifiable populations
154. Genetic screening and the right not to know
155. Frequency of FMR1 premutations in a consecutive newborn population by PCR screening of Guthrie blood spots
156. Multiple acyl-coenzyme A dehydrodogenase deficiency: Diagnosis by acyl-carnitine analysis of a 12-year-old newborn screening card
157. Screening infants for hearing loss - An economic evaluation
158. Health economic analysis of the neonatal screening program in Japan
159. The cost-effectiveness of prenatal carrier screening for cystic fibrosis
160. Referral rates and cost efficiency in a universal newborn hearing screening program using transient evoked otoacoustic emissions
161. Carrier screening for cystic fibrosis: Costs and clinical outcomes
162. Not-so-strange bedfellows: Models of interaction between managed care plans and public health agencies
163. Avoiding the cost burden of newborn screening for the poor and uninsured: Mississippi's model
164. Increased rate of routine second newborn screen in Washington state
165. Problems associated with early discharge of newborn infants. Early discharge of newborns and mothers: A critical review of the literature
166. The politics of 'Drive through deliveries': Putting early postpartum discharge on the legislative agenda
167. Improving state Medicaid contracts and plan practices for children with special needs
168. A new definition of children with special health care needs
169. Children's continuity of coverage under the Kassbaum/Kennedy Bill
170. Benefits Packages in Non-Medicaid CHIP Plans