Access to NDRS data

On 1 October 2021, the responsibility for the management of the National Disease Registration Service (NDRS), a collection of data on all cancers, rare diseases and congenital anomalies diagnosed each year in England, transferred from Public Health England (PHE) to NHS Digital and NHS Digital is now the data controller for this data.

Access to NDRS data via NHS Digital routes – update May 2022

As part of the long-term plan for data access to NDRS data through NHS Digital, we are beginning to transition the service from UKHSA Office for Data Release (ODR) to NHS Digital Data Access Request Service (DARS).

There will be 3 stages to the transition of the service:

1. Expired/Expiring data sharing agreements – from 9 May 2022, the NHS Digital DARS service will begin to contact all current ODR Data Sharing Agreement (DSA) holders with expired and expiring contracts to ascertain whether they wish to extend their contract or undergo the data deletion procedure.

2. Current applications – if you have an application already in the system, the DARS team will be making contact with you in the near future to confirm your data access request and provide you with an estimated completion timeline. This includes those who have applied for access to NDRS data since the transition of NDRS to NHS Digital on 1 October 2021.

3. Future applications – over the coming weeks applicants will be able to make new applications to the NHS Digital DARS service. We will update these pages with planned dates.

We will not be responding to any expressions of interest until these processes are in place. Please note, new expressions of interest, applications and amendments for NDRS data will no longer be taken forward by the ODR and will need to be made to NHS Digital directly.

When open, the intention is that DARS will initially only process applications for data which sit under the National Cancer Registration and Analysis Service (NCRAS) suite of products.

This webpage will explain the process and documentation needed to gain access to data via DARS.

Please note that this will be a beta service with initial release functionality that will be increased over the following months. This means that for the time being, applicants will only be able to request NCRAS data as prior, and not any additional linkage to NHS Digital datasets. Further information will be made available when this service is up and running.

For requests for data which sit under the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) suite of products, please contact: NDRSenquiries@nhs.net

More information

Further information about the new process for NDRS data through NHS Digital will be available shortly.

This page will be updated when this service goes fully live. In the meantime, if you require further information regarding the current routes for NDRS data release please contact: NDRSenquiries@nhs.net