The recent news of an NHS driven DNA database for 100,000 subjects in the UK is a major statement of intent from the government. Following up on announcements regarding access to patient data via the Clinical Practice Research Database (CPRD) and calls for the NHS to lead the world in genetic medicine last year, this is a further step towards improving patient care with better knowledge of our genomic characteristics.
With 60 million people under one health provider, the NHS has the capacity to curate world-leading data and insight into the best patient treatments and associated genetic characteristics. If successful, this will also be a highly valuable resource to attract drug companies to perform precision clinical trials and studies in the UK, and provide invaluable patient data to newcomers in the market such as nutriceuticals, health app designers and food & drink producers. This resource could drive an ecosystem of small & medium enterprise (SME) and start-ups to build health-based products built on a detailed understanding of patient population and individual subject characteristics.
Key to the success of the project will be:
- Quality of the clinical and genomic data that is collected and stored
- Reproducibility and accuracy of genomic sequencing
- Data analysis and presentation to support research and clinical decision-making, which is critical to ensuring the information is usable by different communities
Genomic sequencing techniques are still rapidly evolving, resulting in challenges in preparing samples for analysis and in consistent data analysis. Having a single/small number of sites will help this tremendously, but end to end data management (from sample to report) is key to reproducibility, audit trails and data provenance.
The ability to stratify patient populations enables pharma companies to run smaller, more efficacious trials because the predicted outcome is so much more impactful. Profiling large patient populations for clinical characteristics and molecular markers will be a huge benefit to pharma and UK-based trials, allowing populations to be stratified to a strong responding set of target patients, which will often be smaller than a standard trial.
£100m shows a strong commitment to create a knowledge resource to be reckoned with, although realistically this budget will quickly be eaten up over the course of five years.
IDBS is supporting this field in a number of major UK hospitals, many of whom recently spoke at the IDBS Translational Medicine Symposium in London. Quality of clinical data, standardization of genetic analysis and challenges in combining clinical and genomic data were all key topics.