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Patient information leaflets

Patient information leaflets on disease registration are available through the National Disease Registration Service (NDRS). 

Cancer patient leaflet

Every person who receives a cancer diagnosis should be informed about the cancer registration process, including how their data is used and that they have the right to opt out if they wish.

We have made a leaflet to make sure that information about cancer registration is relevant and accessible to patients, carers and the public. The leaflet gives information about:

  • what cancer registration is
  • what information is collected
  • how your information is secure

If you work for a hospital or a clinic, you can order printed leaflets to give to patients. You need to order at least 50 leaflets.

Please contact us [email protected] to order printed cancer information leaflets:

Trust guidance for the cancer patient leaflet 

Trusts should make sure that patients are provided with information about cancer registration at an appropriate time after a cancer diagnosis.  

We have produced guidance to help support trusts with raising awareness of cancer registration.

Congenital anomaly and rare diseases leaflet

Leaflets about congenital anomalies and rare diseases should be available to patients in the appropriate clinical areas of NHS trusts.

This leaflet contains information for patients about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), including;

  • who we are.
  • why we collect your data.
  • how your data is collected.
  • your right to opt out for yourself and/or your child.

Digital version of the patient leaflets

We have developed a digitally accessible version of the patient leaflets that can be downloaded below. Over the next 3 months, we are working with a number of trusts to pilot different ways of distributing the digital leaflet to patients and to help develop guidance for all trusts. 

If you work for a trust and you would like to take part in the pilot, please email us at [email protected] and we will send you the digital leaflet and more information.

Or if you are part of an organisation and you would like to host the digital leaflet and information about Cancer Registration on your website, please also email us at [email protected] 

Click on the boxes below to download the digital versions of the patient information leaflets:

Last edited: 6 June 2023 12:04 pm