Neonatal screening for cystic fibrosis in Wales and the West Midlands: clinical assessment after five years of screening.

Chatfield, S.; Owen, G; Ryley, H C; Williams, Joanne; Alfaham, Mazin; Goodchild, Mary C.; Weller, P

doi:10.1136/adc.66.1_spec_no.29

Cited by 150 publications

(124 citation statements)

References 21 publications

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“…22 In the UK CF Database, neonatal screening accounts for around one in 10 CF patients and the overall median age of diagnosis is 4 months, whilst in populations without screening, the mean age of CF diagnosis is reported at 5.7 months 23 and 11.7 months. 5 …”

Section: Differences In Presentation Between Uk and North Americamentioning

confidence: 99%

Demographics of the UK cystic fibrosis population: implications for neonatal screening

et al. 2002

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Section: Differences In Presentation Between Uk and North Americamentioning

confidence: 99%

Demographics of the UK cystic fibrosis population: implications for neonatal screening

et al. 2002

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“…Because early treatment improves outcome [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15] and the Centers for Disease Control and Prevention has stated that the addition of CF to state newborn screening (NBS) programs is justified, 16 there has been increased interest in adding CF to state NBS programs. Individuals who are diagnosed with CF through NBS have improved nutritional status, 17 better growth, 14 and fewer hospitalizations, [17][18][19] whereas a delayed diagnosis can result in significant cognitive dysfunction 20 and nutritional failure.…”

mentioning

confidence: 99%

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

et al. 2007

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Newborn screening for cystic fibrosis offers the opportunity for early intervention and improved outcomes. This summary, resulting from a workshop sponsored by the Cystic Fibrosis Foundation to facilitate implementation of widespread high quality cystic fibrosis newborn screening, outlines the steps necessary for success based on the experience of existing programs. Planning should begin with a workgroup composed of those who will be responsible for the success of the local program, typically including the state newborn screening program director and cystic fibrosis care center directors. The workgroup must develop a screening algorithm based on program resources and goals including mechanisms available for sample collection, regional demographics, the spectrum of cystic fibrosis disease to be detected, and acceptable failure rates of the screen. The workgroup must also ensure that all necessary guidelines and resources for screening, diagnosis, and care be in place prior to cystic fibrosis newborn screening implementation. These include educational materials for parents and primary care providers; systems for screening and for providing diagnostic testing and counseling for screen-positive infants and their families; and protocols for care of this unique population. This summary explores the benefits and risks of various screening algorithms, including complex situations that can occur involving unclear diagnostic results, and provides guidelines and sample materials for state newborn screening programs to develop and implement high quality screening for cystic fibrosis.

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“…This probably was attributable to a significantly earlier colonization with P. aeruginosa infection (52 versus 289 weeks) in the screened group followed at the clinic that in the early years of the study integrated young and old patients irrespective of their pulmonary status (29). The U.K. RCT did not find differences in clinical or radiological scores between groups at ages 1-4 years (78).…”

Section: Pulmonary Outcomesmentioning

confidence: 88%

“…During the second year of life, mean hospitalization admission rates in the prophylaxis group were one fourth as high, and mean duration of hospital stay was one third as high (p<0.01). Two RCTs not restricted to infants detected by screening (78,115) and using different antibiotics did not find a preventive effect of prophylaxis (116). One RCT identified an apparent risk of elevated P. aeruginosa isolation after 4 years of continual prophylaxis (115).…”

Section: Hospitalizations and Burden Of Carementioning

confidence: 99%

“…Studies indicate a substantial benefit of newborn screening in reducing the days of hospitalization for children with CF, including one RCT from the United Kingdom (78) and observational studies from Australia (80), France (87), the United Kingdom (91), and the United States (27). A preliminary analysis of retrospectively collected data from the Wisconsin RCT has not demonstrated this to be the case, which might be attributable to how the data were collected or to differences in treatment protocols.…”

Section: Evidence Of Benefits Health Outcomesmentioning

confidence: 99%

See 1 more Smart Citation

Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs—

Grosse¹,

Boyle²,

Botkin³

et al. 2005

The Journal of Pediatrics

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Recommendations and ReportsOctober Disclosure of Relationship CDC, our planners, and our content specialists wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters with the exception of Anne Marie Comeau, Ph.D. She wishes to disclose that she is employed by the University of Massachusetts Medical School, which operates a newborn screening program. This report does not include any discussion of the unlabeled use of a product or a product under investigational use.

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Neonatal screening for cystic fibrosis in Wales and the West Midlands: clinical assessment after five years of screening.

Cited by 150 publications

References 21 publications

Demographics of the UK cystic fibrosis population: implications for neonatal screening

Demographics of the UK cystic fibrosis population: implications for neonatal screening

Guidelines for Implementation of Cystic Fibrosis Newborn Screening Programs: Cystic Fibrosis Foundation Workshop Report

Newborn Screening for Cystic Fibrosis: Evaluation of Benefits and Risks and Recommendations for State Newborn Screening Programs—

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