Patient information leaflets

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 print leaflets to give to patients using the download below.

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.

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.

Trusts should ensure that patients being offered genetic testing should be signposted to the Genetic Test Information leaflet. This will soon be provided in printed form to clinical genetics services; in the meantime, a digital version of the leaflet can be accessed in the section below.

We have developed a digitally accessible version of the patient leaflets that can be downloaded below.

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].