National Inherited Cancer Predisposition Register (NICPR) Data set

The National Disease Registration Service (NDRS) is responsible for the collection, curation, quality assurance and analysis of comprehensive population-based cancer and rare disease data across England. 

NDRS collects genetic diagnostic data on people with inherited predisposition to cancer, and uses it to support disease registration, screening, direct patient care, research and clinical audit. Please follow the link to view further details of the National Inherited Cancer Predisposition Register.

Data submissions are required from all NHS Trusts hosting a Clinical Genetics Service.

Setting up a data collection

To be granted the relevant access, NHS Clinical Genetics services (for Lynch Registry & National Inherited Cancer Predisposition Register) should contact us at [email protected].

The table below gives a brief overview of the data items contained within the NICP Dataset. For a more detailed description of the data set, the expected format and the mandatory items please contact the team at [email protected].

Our Directions and legal basis for collecting data are outlined on our website National Disease Registries Directions 2021 - NDRS

We have produced a patient information leaflet on genetic test data, which explains what information is recorded in NDRS and why.

NICPR Dataset

• submitting NHS organisation
• GMC number of consultant
• submission date
• gene
• date of diagnosis
• ascertainment route
• type of test
• affected status
• family history
• zygosity
• mosaicism
• variant (HGVS/ISCN/Free text)
• pathogenicity class (Pathogenic = 5/Likely pathogenic =4)
• transcript ID
• identifier of screening programme (Only VHR currently)
• information relevant to screening programmes
• eligibility criteria for screening programme e.g. Gene/CANRISK score

Retrospective data collections have been undertaken from all clinical genetics services. Please liaise with us at [email protected] for further guidance with this. 

Prospective data should generally be submitted in near-real-time, as patients are diagnosed. This keeps the national register up to date and ensures timely access of newly-diagnosed patients to screening programmes.

We are committed to supporting our partners and continuously improving the NICPR Dataset. Your feedback and suggestions are always welcome. 

For help and support, please contact us at [email protected].