Cancer Registration - Cancer Research UK

Cancer Registration - Cancer Research UK

Registry information has shown that 1 in 2 people will now survive cancer for at least 10 years. The more information we have in the registry, the ea...

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Registry information has shown that 1 in 2 people will now survive cancer for at least 10 years.

The more information we have in the registry, the easier it is to improve diagnosis and treatment.

Cancer registration is crucial for progress against cancer, and is supported by all the main UK cancer charities and cancer patient groups.

Achievements made possible by cancer registration information: • research showing that there are at least 10 different types of breast cancer, which means treatments can be made more specific for each type

What if I don’t want my details on the cancer registry? The benefits of the data collected by the cancer registry have been considerable and we are grateful that nearly everyone with cancer is prepared to share their data with the cancer registry. However, you can ask us to remove all of your details from the cancer registry at any time. These requests won’t affect your treatment or care. If you wish to make such a request, you should email [email protected] or write to Director National Cancer Registration Service Public Health England Wellington House London SE1 8UG

Against Breast Cancer Bowel & Cancer Research Bowel Cancer UK Brain Tumour Research Brain Tumour Research Campaign Brainstrust Breast Cancer Campaign British Lung Foundation Core – the Digestive Disorders Foundation Cancer52 Cancer Research UK GIST Support UK It’s in the Bag James Whale Fund for Kidney Cancer Jo’s Cervical Cancer Trust Skcin – The Karen Clifford Skin Cancer Charity Leukaemia & Lymphoma Research Lymphoma Association Macmillan Cancer Support Marie Curie Cancer Care Melanoma Focus My Name is NOT Cancer Myeloma UK Pancreatic Cancer Action Rarer Cancers Foundation Sarcoma UK Shine Cancer Support Skin Cancer Research Fund Target Ovarian Cancer Teenage Cancer Trust The Pelican Cancer Foundation The Pink Ribbon Foundation WMUK

• monitoring whether cancers are becoming more or less common – for example spotting the rapid increase in skin cancer cases has led to prevention campaigns to promote staying safe in the sun and avoiding sun beds • improvement of the breast cancer screening programme, and the decision to introduce flexible sigmoidoscopy (a technique for examining the bowel) as a method of screening for bowel cancer • research around when and where patients are diagnosed with cancer, which showed that almost a quarter are diagnosed in an emergency. This has reinforced the importance of finding ways to get more patients diagnosed early

If you have any questions about cancer registration, you can get more information by: • asking your doctor • visiting the Cancer Research UK website at www.cruk.org/cancer-registration or the cancer registration website at www.ncr.nhs.uk/patientinfo where you will find a longer booklet • and for any questions on cancer, speak to one of Cancer Research UK’s nurses on freephone 0808 800 4040 (9am–5pm, Monday to Friday)

PHE publications gateway number: 2014449 © Crown Copyright 2014 Image source: Cancer Research UK

Cancer Registration – what it is, the benefits of being on the register, and your options

We’ve made great strides in recent years in our understanding of what causes cancer and how best to diagnose and treat it. But we can only continue this progress if we have information about the people who are developing cancer. We collect this information through a process called cancer registration.

Cancer registration helps scientists investigate possible causes of cancer and improve treatment options.

Here, we explain why information about you and your cancer is recorded, how this information is used, and how, if you wish, you can see your information or have it removed from the registry. What is cancer registration? If you or your child has been diagnosed with cancer, or a condition that can lead to cancer, the medical staff looking after your health will pass information about you on to the National Cancer Registration Service. This will include your name, address, age, sex and date of birth, as well as information about the type of cancer or condition you have, and your treatment. The Registration Service has the government’s permission to collect this information. To get a complete picture we will also link this information to your other health information and to patient surveys about your care, and may share it with the nurses and doctors who are looking after you.

Your details drive progress in cancer prevention and treatment Cancer registration is the only way we can keep track of how many people are getting cancer and what types of cancer they have. Healthcare teams use this information to continually evaluate and improve services and treatment options for patients.

How will it benefit me? There is no guarantee that having your information on the cancer registry will directly benefit you. However, we know that registry information is continually leading to improvements and new information on the prevention, diagnosis and treatment of cancer and so can help future generations.

Cancer registration also fuels research into cancer, helping scientists investigate possible causes of cancer and improve treatments for the disease. This information is crucial for progress against cancer, and is supported by all the main UK cancer charities and cancer patient groups.

In order to give each person the best possible care, we need to know how different cancers respond to different treatments – this information is held in the registry.

Is my information confidential? Making sure your personal information is private and confidential is very important. Without your consent or a strict approval process, information that can be used to identify you will only be released to those providing your care, such as your hospital and doctor. If you would like to see the information we have about you on the registry, we can give this to your doctor for them to share with you.

The registry could also make it easier for your doctor to see whether you could enrol in any clinical trials. If you have a family history of cancer, doctors can use the registry to find out what treatments worked best for your relatives and tailor your care accordingly. Registry information is sometimes also used to find out which patients have had a particular treatment. This helps doctors identify any patients they need to contact about the treatment.