ArticleJournal of cystic fibrosis : official journal of the European Cystic Fibrosis Society2018
A guide to interpreting estimated median age of survival in cystic fibrosis patient registry reports.
Article in Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Interventions for improving adherence to airway clearance treatment and exercise in people with cystic fibrosis.The Cochrane database of systematic reviews · 2023Pooled it
- Impact of CFTR Modulators on Longitudinal Cystic Fibrosis Survival and Mortality: Review and Secondary Analysis.Pulmonary therapy · 2025Review
- Survival of people with cystic fibrosis in Australia.Scientific reports · 2022Article
- Colorectal Cancer Screening and Surveillance for Non-Hereditary High-Risk Groups-Is It Time for a Re-Think?Current treatment options in gastroenterology · 2021Review
- Review
- Evaluation of a five-year predicted survival model for cystic fibrosis in later time periods.Scientific reports · 2020Article
- Correspondence between symptoms and preference-based health status measures in the STOP study.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2019Observational
- Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.PloS one · 2019Article
- Dynamic Prediction of Survival in Cystic Fibrosis: A Landmarking Analysis Using UK Patient Registry Data.Epidemiology (Cambridge, Mass.) · 2019Article
- Up-to-date and projected estimates of survival for people with cystic fibrosis using baseline characteristics: A longitudinal study using UK patient registry data.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2018Article
- In statistics we trust: Towards the careful derivation and interpretation of meaningful survival estimates in cystic fibrosis.Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society · 2018Article
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Authors and funding
2 authors.
Funding
Abstract
Survival statistics, estimated using data collected by national cystic fibrosis (CF) patient registries, are used to inform the CF community and monitor survival of CF populations. Annual registry reports typically give the median age of survival, though different registries use different estimation approaches and terminology, which has created confusion for the community. In this article we explain how median age of survival is estimated, what its interpretation is, and what assumptions and limitations are involved. Information on survival from birth is less useful for individuals who have already reached a certain age and we propose use of conditional survivor curves to address this. We provide recommendations for CF registries with the aim of facilitating clear and consistent reporting of survival statistics. Our recommendations are illustrated using data from the UK Cystic Fibrosis Registry.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.