16-29 Patients and Survivors

What is the Yorkshire Register?
The Yorkshire Register is a collection of information on children and young people who are diagnosed with cancer and certain benign conditions.

It allows us to know how many children and young people are being diagnosed with cancer in this area. This information is shared with the National Health Service (NHS) and the National Cancer Registration and Analysis Service.

What is the National Cancer Registration and Analysis Service?
Cancer registration allows the NHS to know how many people are being diagnosed with cancer. Whenever a person is diagnosed with cancer, the registration system records their relevant details on a computer database.
Cancer registration has been running for over 50 years in England. Most countries in the world have a cancer registration system.

Why do we need cancer registration?
Cancer Registration is the only way the NHS can identify how many new cancers there are, the type of cancer, who has been diagnosed and where.
It lets the NHS see how successful it is in treating people who develop cancer. NHS staff need to know this to make sure the right services and people are available, in the right place.
Cancer Registration information is also important for cancer research, in helping us to understand more about the causes of cancer and the best way of treating it.

What is the purpose of the Yorkshire Register?
The Yorkshire register exists to provide answers to specific questions pertinent to the Yorkshire population, e.g. how survival differs by ethnicity which is important as the Yorkshire region has a unique and diverse ethnic profile.

What information is held on the Register?
The Yorkshire Register is held at the University of Leeds and has details of over 10,000 children and young people. The University will collect information about you for this research study from medical records. This information will include your name, NHS number, address and health information, which is regarded as a special category of information. We will use this information to carry out research into the patterns and causes of cancer in young people diagnosed in Yorkshire.

Will anyone be told I have cancer?
The Yorkshire Register and the National Cancer Registration and Analysis Service are very careful about every person’s details. There are strict rules about passing these details on to other people, agreed by the Health Research Authority Confidentiality Advisory Group. The information that registries give out or publish does not identify anyone individually, nor enable anyone to be identified. The Yorkshire Register has a data management group to make sure the details are safe and are used properly.

Will my personal data be used in any other way?
Your information may be used by the registry research team to help us to retrieve additional NHS data relating directly to their diagnosis, such as, when you first saw your GP about your cancer symptoms, and subsequent hospital admissions and GP consultations. We do this by sharing a very limited data set with NHS Digital, e.g. date of birth and NHS number. This will help us to understand more about the way young people present to their GP and to monitor the health and well-the most successful treatments are. We may also share limited details to obtain information held in secure government databases. For example information relating to how individuals perform at school or higher education from the National Pupil Database and Higher Education Statistics Authority; and whether they have received any Employment and Support Allowance in later life. This will allow us to look at the impact of cancer on education and social outcomes, and help plan services accordingly. All new data obtained is stored according to our strict secure data protocol.

Who is the study sponsor?
The University of Leeds is the sponsor for this study. We act as the data controller which means that we are responsible for looking after your information and using it properly. The University of Leeds will keep identifiable information about you as long as the Register is funded.

What about your personal rights?
Your right to have control over the information we hold about you is governed by two major UK laws—GDPR and Common Law section 251.

What if I don’t want the Yorkshire Register to know about my condition?
In order to work properly, the Register needs to know about everyone with cancer. Sharing your information with us helps us to find out how best to treat cancer now and in the future.
However, as part of the regulations mentioned above we do offer a right to opt out. Opting out will not affect you or the treatment you receive in anyway. You are able to opt out at any time. If you wish to opt out or would like discuss this further please contact Professor Adam Glaser.

What has the Yorkshire Register shown?
Our research has shown that:

  • The number of children and young people diagnosed with cancer in Yorkshire is increasing.
  • Survival from cancer in young people is getting better over time.
  • South Asians with neuroblastoma, bone tumours and sarcomas have higher survival rates than non–south Asian individuals.
  • South Asians with leukaemia and lymphoma have lower survival rates vs. non-south Asians.

How is the Yorkshire Register funded?
The Candlelighters’ Trust, a charity based at the Leeds General Infirmary, has funded the Register since 1984.

Download this information in a leaflet or view more resources and links.