The National Disease Registration Service (NDRS) is a collection of data on all cancers, rare diseases and congenital anomalies diagnosed each year in England.
On 1 October 2021, the responsibility for the management of NDRS transferred from Public Health England (PHE) to NHS Digital. NHS Digital is now the data controller for this data.
October 2022 update
Applications for National Disease Registration Service (NDRS) data can now be made through NHS Digital’s Data Access Request Service (DARS). While completing an application for data, you will notice ‘Total Cost’ at the top of the page. The ‘Total Cost’ is an estimated charge for processing and disseminating the data you request. As NHS Digital is currently developing a pricing structure for NDRS data requests, the cost shown will be incorrect.
How to get the correct cost associated with your data request
Once you have submitted your application for data, a case officer from the DARS team at NHS Digital will contact you. They will be able to provide you with more details on the cost associated with your data request.
If you are making a resubmission for data already received or an amendment to a current Data Sharing Agreement (DSA), costs may have changed. In this instance, submit the data request to a DARS Case Officer who will be able to confirm associated costs.
Access of 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 are 3 stages to the transition of the service:
1. Expired or 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
From 20 June 2022 applicants will be able to make new applications to the NHS Digital DARS service.
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 [email protected].
Update on current applications and enquiries – August 2022
We have been working closely with the former service responsible for the data access and governance arrangements and have now reached a position where your application/enquiry has transitioned across to NHS Digital.
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 our 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 on the DARS guidance page.
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.