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Impact of newborn screening on outcomes and social inequalities in cystic fibrosis: a UK CF registry-based study
  1. Daniela K Schlüter1,
  2. Kevin W Southern2,
  3. Carol Dryden3,
  4. Peter Diggle1,
  5. David Taylor-Robinson4
  1. 1 Centre for Health Informatics, Computing and Statistics, Lancaster Medical School, Lancaster University, Lancaster, UK
  2. 2 Department of Women’s and Children’s Health, University of Liverpool, Liverpool, UK
  3. 3 Department of Paediatrics, Wishaw General Hospital, Wishaw, UK
  4. 4 Department of Public Health and Policy, University of Liverpool, Liverpool, UK
  1. Correspondence to Dr Daniela K Schlüter, Centre for Health Informatics, Computing and Statistics, Lancaster Medical School, Lancaster University, Lancaster, LA1 4YW, UK; d.k.schlueter{at}


Background Newborn bloodspot screening (NBS) for cystic fibrosis (CF) was introduced across the UK in 2007 but the impact on clinical outcomes and health inequalities for children with CF is unclear.

Methods We undertook longitudinal analyses of UK CF registry data on over 3000 children with CF born between 2000 and 2015. Clinical outcomes were the trajectories of percent predicted forced expiratory volume in one second (%FEV1) from age 5, weight for age and body mass index (BMI) SD-scores from age one, and time to chronic Pseudomonas aeruginosa (cPA) infection. Using mixed effects and time-to-event models we assessed the association of NBS with outcomes and potential interactions with childhood socioeconomic conditions, while adjusting for confounders.

Results NBS was associated with higher average lung function trajectory (+1.56 FEV1 percentage points 95% CI 0.1 to 3.02, n=2216), delayed onset of cPA, and higher average weight trajectory intercept at age one (+0.16 SD; 95% CI 0.07 to 0.26, n=3267) but negative rate of weight change thereafter (−0.02 SD per year; 95% CI −0.03 to −0.00). We found no significant association of NBS with BMI or rate of change of lung function. There was no clear evidence of an impact of NBS on health inequalities early in life.

Conclusions Children diagnosed with CF by NBS in the UK have better lung function and increased early weight but NBS does not appear to have narrowed early health inequalities.

  • cystic fibrosis
  • bacterial infection
  • respiratory infection

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  • Contributors DKS, KWS, CD and DT-R conceived the original idea for this study. DKS, PD and DT-R designed the study and developed the analysis plan. DKS conducted the data analysis. KS and CD helped identify previous work, concluded the clinical implications and set the results in context with their clinical observations. DKS and DTR wrote the first draft of the paper. All authors were involved in interpreting the findings and revising drafts and agreeing the final version.

  • Funding The work was supported by the Strategic Research Centre 'EpiNet: Harnessing data to improve lives' funded by the Cystic Fibrosis Trust. David Taylor-Robinson is funded by the MRC on a Clinician Scientist Fellowship (MR/P008577/1).

  • Disclaimer The funder was not involved in the study design, data collection, data analysis, data interpretation, or in the writing of the report.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval NHS research ethics approval (Cambridgeshire 1 Research Ethics Committee 07/Q0104/2) was granted for the collection of data into the UK database. The Cystic Fibrosis Trust database committee approved the use of anonymised data in this study.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement We used UK CF Registry data in this study. Data are available upon reasonable request from the UK CF Registry

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