Life sciences partnerships with the UK CF Registry
The UK CF Registry is a secure database collecting health data from over 11,000 people with cystic fibrosis in the UK. We support life sciences partnerships by providing high-quality real-world evidence, expert analysis, and ethical oversight to drive research and innovation in CF care. Collaborate with the UK CF Registry to accelerate advancements in cystic fibrosis treatment and outcomes.
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What is the UK CF Registry?
The UK CF Registry is a world-leading, secure centralised database that collects health data from over 11,000 people with cystic fibrosis across the UK. Data collected as part of the routine clinical care of a person with CF is recorded on the UK CF Registry at annual reviews and other clinical appointments throughout the year. Approximately 99% of people with CF consent to their data being submitted.
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How does the UK CF Registry work with the life sciences industry?
We work closely with the life sciences industry to support data analysis and insights, research and real-world evidence generation. A strict evaluation process, overseen by a committee of experts, ensures that UK CF Registry data is used in line with the consent that has been provided, and that it has maximum impact for people with CF.
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How can the UK CF Registry support you?
Provided on a full-cost recovery basis, UK CF Registry data and our expert team can support you in the following ways:
Real-world evidence
- Support analysis and insight generation into the UK CF population using our longitudinal data sets through our data request process.
- Conduct your epidemiology studies using real word data collected through the UK CF Registry.
- Generate real-world evidence (RWE) on the use and effectiveness of drugs and treatments to support regulatory submissions and inform clinical practice.
- Deliver post-marketing studies such as Post-Authorisation Safety and Efficacy Studies (PASS/PAES), with long-term safety monitoring to support regulatory submissions.
- Interrogate longitudinal observational data on many aspects of living with CF.
Health Technology Assessment
Strengthen technology assessment submissions using RWE from UK CF Registry. The UK CF Registry has been recognised as an exemplar by NICE in the UK in their real-world evidence framework.
Clinical trials
The UK CF Registry can:
- offer a national pre-feasibility service across UK CF centres (prior to Clinical Trials Accelerator Platform feasibility process) to support clinical trial site identification.
- provide Registry data and insights to inform trial design.
- support protocol design and implementation of innovative Registry-based pragmatic clinical trials with Registry team expertise.
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What data does the UK CF Registry capture?
- demographics
- genotype
- diagnosis
- lung health
- lung infections
- complications
- antibiotics and mediation use
- physiotherapy and other therapies (including transplants)
- pregnancy
- Cystic Fibrosis Questionnaire Revised (CFQ-R), which measures quality of life.
Review all data items collected but the UK CF Registry in our demographic proforma and annual review proforma.
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What are the benefits of working with the UK CF Registry?
Benefits of working with the Registry include:
- the ability to add bespoke data collection variables, such as specific outcome measures and medication start/stop dates
- annual data validation and data quality audits
- high completeness and accuracy
The Registry is approved by UK NHS ethics committee.
The UK CF Registry is like gold dust, we’re so lucky to have it. It guides how we help people with CF to manage their condition now, and we can conduct research to answer their questions about the future.
Dr Jamie Duckers, Chair, UK CF Registry Steering Committee
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Contact us
Interested in working with the UK CF Registry? Get in touch with us today!
Our annual report
Each year, we publish a report of Registry data results from over 99% of the UK CF population.
Apply for data
Researchers from recognised institutions can apply for access to aggregated, anonymised, or pseudonymised data from the UK CF Registry to perform their own analysis for the benefit of people with cystic fibrosis.