Skip to main content

Get Data Out

The Get Data Out (GDO) programme publishes in-depth, anonymous data about cancer to support research. Key statistics on incidence, treatment, survival, and routes to diagnosis are published on small, clinically meaningful groups of cancer patients.

Introduction

Get Data Out produces key statistics about groups of cancer patients. Patients diagnosed with a certain type of tumour are split into many smaller groups, each of which contains approximately 100 patients with the same characteristics. For each group of patients, we routinely publish statistics about:

  • Incidence (how many people get the disease)
  • How and where the disease was diagnosed (routes to diagnosis)
  • Treatments
  • Survival

The Get Data Out programme is unique amongst cancer publications from NDRS because it produces statistics about small groups of patients. We hope that by releasing detailed data like this we can help researchers, the public and patients themselves discover more about cancer.

NDRS works in partnership with charities, clinicians and researchers to produce the data. Will Jones, Chief Executive of the charity brainstrust said:

It's really important for people who have a brain tumour and the people that are caring for them to see how many other people there are like them and what's happening to them during the course of their illness. We think it's a real step forward and certainly gives people who use our services and support a sense that they are not alone.

Data releases

The latest data release can be accessed from the Get Data Out page via the dashboard link.

So far, detailed statistics have been released for the following cancer sites:

  • Bladder, urethra, renal pelvis and ureter
  • Blood cancer (haematological neoplasms)
  • Blood cancer (haematological neoplasm) transformations
  • Bone
  • Brain
  • Eye
  • Head and neck
  • Kaposi sarcoma
  • Kidney
  • Liver and biliary tract
  • Lung, mesothelioma, and other thoracic
  • Oesophagus and stomach
  • Ovary
  • Pancreas
  • Prostate
  • Sarcoma
  • Skin tumours
  • Soft tissue
  • Testes

We are working to expand the programme to cover more tumour groups.

You can read more about the work using Get Data Out statistics in our data story. 

Partner outputs using Get Data Out data

The aim of Get Data Out is to produce routine, detailed statistics on small groups of cancer patients. Our data can then be accessed and analysed by charities, academics, and other users. Some examples of how our data has been used are given below. More examples can be found on the gallery tab of the dashboard which can be accessed on the Get Data Out page.

brainstrust dashboard (opens in a new window)

Example of Brains Trust dashboard

Figure 1: Text description

NDRS Get Data Out dashboard which publishes in depth, anonymous data about cancer to support research. Key statistics on incidence, treatment, survival, and routes to diagnosis are published on small, clinically meaningful groups of cancer patients

Fight bladder cancer report (opens in a new window)

Screenshot of fight bladder cancer report

Figure 2: Text description

My diagnosis counts

20,000 a year - the number of incidences of bladder cancer in the UK.

Every diagnosis of bladder cancer is personal and no one should feel like just a number. However, it is important to collect statistics on bladder cancer so we can understand it better and provide the best treatment and support for everyone. Poor awareness about bladder cancer is a major barrier to early diagnosis, especially for those whose initial symptoms do not fit the typical profile. This affects long-term outcomes for patients and their families. However, if we understand more about the different symptoms that can present and the categories of diagnosis, we should improve treatment for ourselves and people we care about. People affected by bladder cancer in our network have shared their own experience of diagnosis and why they think raising awareness is so important.

How many people are diagnosed with bladder cancer each year?

When a diagnosis of bladder cancer is recorded in a hospital, different codes are used in the computer system, depending on the type of bladder cancer. These codes are based on the Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10). There are three relevant codes: C67, D09.0 and D41.4.

Invasive bladder cancer C67

C67 is what is usually referred to as ‘bladder cancer’ in statistical publications. It is defined as bladder cancer which has spread to the connective tissue that separates the lining of the bladder from the muscles beneath, or further into the muscle around the bladder.

Non-invasive bladder cancer D09.0 and D41.4

D09.0 Carcinoma in situ of bladder. Carcinoma in situ is a flat bladder cancer that is confined to the surface layer of the bladder and is more likely to lead to invasive bladder cancer. D41.4 Neoplasm of uncertain behaviour of bladder. This is how most of the other bladder cancers are classified, including non-invasive papillary carcinoma - a growth which sticks out of the bladder wall. Unfortunately Cancer Research UK only counts invasive bladder cancer (C67), which means that if we use their statistics, we are not counting everyone.

Target ovarian cancer report (opens in a new window)

Screenshot of target ovarian cancer report

Figure 3: Text description

Data briefing on ovarian cancer - December 2018

Target Ovarian Cancer has analysed new government data on ovarian cancer which includes routes to diagnosis, different types of tumour and treatment. This information helps measure the impact of work such as our GP education programme and identify areas where more needs to be done, for example, investing in research into less common types of ovarian cancer or campaigning for improved access to treatment.

Figure 4: Text description

The story behind the data Report 1: Non-malignant brain tumours (NMBTs)

Figure 5: Text description

New insights on pancreatic cancer May 2019

Summary

In February 2019, the National Cancer Registration and Analysis Service (NCRAS) at Public Health England (PHE) published a new data set for pancreatic cancer which has started to reveal new insights into the care, treatment and outcomes for pancreatic cancer in England.

What the data shows?

  • exocrine pancreatic cancer (including Pancreatic Ductal Adenocarcinoma (PDAC) is the most common and aggressive subtype on pancreatic cancer while Pancreatic Neuroendocrine Tumour (PNET) is rarer with better prognosis
  • only 16% of exocrine pancreatic cancers are diagnosed at an early stage (stage 1 and stage 2)
  • diagnosis of exocrine pancreatic cancer at an early stage has 6x higher survival than diagnosis at stage 4
  • less than 50% of people with exocrine pancreatic cancer will survive 3 months from diagnosis with survival halving again to 25% at 9 months

Recommendations

  1. Radical improvement in early diagnosis is essential to transform survival for pancreatic cancer. We need to see more search into early diagnosis into early diagnosis of pancreatic cancer to enhance GP decision making tools and biomarker tests.
  2. Pancreatic cancer is undertreated and often this is even for people diagnosed at an early stage, where life saving surgery is still possible. We need faster and better access to treatment so that more people have the opportunity to survive longer.

Last edited: 3 March 2025 1:21 pm