National Inherited Cancer Predisposition Register

In 2023, the National Disease Registration Service (NDRS) established the national Lynch Syndrome register, following a request from the national Bowel Cancer Screening Programme (BCSP). The Lynch register system sends a daily electronic feed of patient data to BCSP, hence enabling national co-ordination of colonoscopy screening for Lynch syndrome patients. The National Inherited Cancer Predisposition Register (NICPR) is effectively an expansion of the system from the Lynch syndrome pilot to encompass all Cancer Susceptibility Genes (CSGs). Similar links to national screening services will be set up where such services exist.

The NICPR, launched on 30 June 2025, is the result of a collaboration between NDRS and other NHS England programmes (Cancer, Genomics, Screening), as well as the UK Cancer Genetics Group (UKCGG). Its development fulfils Action 26 of the England Rare Diseases Action Plan for 2023. The remit of NICPR is to capture data on individuals with a Likely Pathogenic / Pathogenic (LP/P) variant in a Cancer Susceptibility Gene (CSG) in England.

Through linkage to other NDRS data, this will generate:

1. A central list of all people in England with a P/LP variant in a CSG.
2. Accurate figures regarding incidence, prevalence, demographics and geography, which will support service planning and ensure equity.
3. A national referral route into cancer screening services.
4. Improved knowledge of patient life-course, subsequent cancers, treatments, and long-term outcomes (via linkage to other datasets, such as the main cancer registration dataset and Hospital Episode Statistics (HES)).
5. Potential for centralised patient communications regarding advances in clinical management etc.
6. Opportunities for research and clinical audit (for example health economic evaluations and clinical trial entry).

NDRS is required by direction of the Secretary of State, under Section 254 of the Health and Social Care Act 2012, to operate the National Disease Registries – these cover all cases of cancer (including conditions that might lead to cancer), congenital anomalies and rare diseases diagnosed or treated by the NHS in England. This legal basis enables NDRS to collect identifiable information without specific consent.

Under Section 259 of the same Act, organisations are legally obliged to provide NDRS with the requested data. The national opt out does not apply to NDRS; however a separate NDRS opt out is in place. Patients should be made aware that opting out of NDRS may affect what screening they are offered; they should also be signposted to the digital version of the NDRS patient information leaflets for more information.

The register covers a dynamic list of ~120 Cancer Susceptibility Genes (CSGs). The list will be updated as necessary according to clinical best practice and to reflect changes / incorporate additional genes specified in the NHS National Genomic Test Directory for Rare and Inherited Disease. 

The register covers all people with a P/LP variant in a CSG, regardless of their cancer status. It will consolidate historically made diagnoses with prospective diagnoses.

Find out more in the supporting information section below. 

Retrospective Data Collections

Data collection is being undertaken during 2025, as a discrete, funded piece of work by each regional clinical genetics service. Data or any queries should be emailed to [email protected].

Prospective Data Collections

Details of patients diagnosed from 1 July 2025 onwards should be submitted through the NDRS Submissions Portal (opens in a new tab). Everyone with existing access to the Lynch portal will automatically be granted permissions for the new NICPR portal.

Each of the 17 Regional Clinical Genetics Services, as well as the Cancer Genetics Services at the Royal Marsden and St. Mark’s Hospital, should have a named consultant who is responsible for ensuring that NICPR is notified of every eligible patient at their own service. Central NICPR governance is covered by a steering group comprised of representatives from all organisational stakeholders listed in the policy, purpose and stakeholder section above.

Since 2017, all NHS Genomics Labs have been sending details to NDRS of all genetic testing for cancer susceptibility genes. NHS Labs should continue to submit these returns as per existing arrangements, until further notice. The two datasets have different use cases, as summarised in the table below:

The NICPR will enable referrals to be made to national cancer screening services, where such services are available for people carrying CSGs.

At the time of NICPR launch (1 July 2025), the following arrangements are in place with screening services.

Bowel Cancer Screening Programme (BCSP)

People with Lynch syndrome are referred automatically, via the existing Lynch register. Because this is an existing electronic link, we made the decision to keep the Lynch register separate from the main NICPR for the time being. However, it is likely that the registers will be merged in due course.

Very High Risk Breast Cancer Screening Programme (VHR)

Eligibility details (for CSG carriers and risk-equivalent women) are specified on the Government website. Both groups of women should be referred to VHR via registering the person on the NDRS submissions portal. The portal homepage gives the option of the main NICPR or Risk-equivalent register: the proforma submission differs between these two registration options, but the VHR referral process is identical. At the time of NICPR launch, referral to VHR screening is via a printed form; however an electronic referral process is planned as a future development. In the meantime, there is the option to generate a downloadable and printable PDF referral form from the patient details entered into the NICPR portal.

We recognise that there will be many expressions of interest in using the NICPR data for clinical audits, research etc. In due course, data may be made available through NDRS’ existing formal data release channels. The usual safeguards around legitimate purpose and patient confidentiality will still apply.

In the meantime, any data requests should be directed to the NICPR Governance and Steering Board, via [email protected].

The team has produced a supporting information document available to download below. 

If your question is not covered, please email us at [email protected].