Work Package 1

Collection, linkage and analysis of nationally available cancer and molecular data 

Work package 1 is split into three distinct pathways with the overall aim of utilising nationally available datasets for generating evidence of the risks relating to cancer susceptibility genes and effectiveness of clinical interventions in different populations to inform clinical decision-making. 


In 2018, the National Disease Registration Service initiated the collection of germline cancer predisposition genetic data from UK NHS laboratories.


 The team at Public Health England/Health Data Insight will continue the collection and restructuring of the data, making it available within the National Cancer Registry for analysis and national audits of the service.

More information about the NDRS molecular and genetic dataset can be found here


Once the germline genetic data collected from labs is made available within the National Cancer Registry, the data can be linked to additional datasets by our experienced Data Manager at the University of Oxford.  

CanGene-CanVar have received Health Research Authority and Research Ethics Committee approval to make pseudonymised, linked datasets available for analyses by approved researchers within a secure trusted research environment. 


Our programme researchers, including Clinical Fellows and PhD students at the University of Cambridge and Institute of Cancer Research, will be utilising the linked datasets to address specific questions relating to cancer predisposition genetics and clinical care.


 Some examples of projects include: secondary cancer risks, outcomes following risk-reducing surgery, and treatment outcomes for breast cancer patients with high risk cancer susceptibility gene variants. 


Meet The Team

Work Package 1a: Collection of Data

Work Package 1b: Linkage of Data

Work Package 1c: Analysis of Data


The CanGene-CanVar programme is running from (2019 - 2024) with individual milestones for our work streams targetted for completion at different times during this period. We do not yet have any outputs from this particular work package, but the hard work is ongoing and we look forward to sharing news and outputs with you as soon as they are published!

In the meantime, find out what we're getting up to on our news page or read the latest publications from all our work packages.