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 August 2022
For those with an existing applications or expired Data sharing agreements we have been working closely with UKHSA Office for Data Release (ODR) and have now reached a position where existing applications and enquiries have transitioned across to NHS Digital Data Access Request Service (DARS).
Current applications – We are working through the requests in date order and will be in touch with applicants directly when we come to the request. It is likely that we will need to put these requests through the formal data request process here in NHS Digital and we will work with applicants to utilise as much of the information they have already provided to ODR. Whilst we work on assessing the requests, it may be useful, if applicants have not done so already, to familiarise themselves with the NHS Digital DARS standards which applications will need to meet. These can be accessed via the following webpage – https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance
Please do not make a new application to us until we have contacted you so we can ensure that we direct you though the most appropriate route.
New applications – Please follow the guidance on https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance. 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 increase over the following months. This means that, for the time being, applicants will only be able to request data which sit under the National Cancer Registration and Analysis Service (NCRAS) suite of products, 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
If you require further information please contact: NDRSenquiries@nhs.net