Collecting data on diseases
Governments all over the world collect data about disease and mortality, as does the World Health Organisation. Those who access that data use it to help prioritise resources and health promotion campaigns. At The Brain Tumour Charity, we rely on data to understand and explain the challenges we face in tackling this devastating disease.
Data helps health services:
- Better understand the causes and symptoms of disease.
- Identify who might be most at risk of becoming ill.
- Work out how to diagnose diseases early or stop them from spreading e.g. with COVID-19.
- Figure out how to provide better care and treatment.
- Run more efficient and effective services so everyone gets the care that they need.
Where to find reliable data
In the UK, reliable data sources might include the Office of National Statistics, Government reports and Cancer Research UK.
Further afield, the Institute for Health Metrics and Evaluation at the University of Washington School of Medicine in the USA, has developed the Global Burden of Disease Results Tool. This independent population health research unit collates information provided by researchers based all over the world. Doing so helps to “develop timely relevant, and scientifically valid evidence that illuminates the state of health everywhere.”
In making our research available and approachable, we aim to inform health policy and practice in pursuit of our vision: all people living long lives in full health
Institute for Health Metrics and Evaluation
What does the data show?
The Brain Tumour Charity has used the GBD Tool to examine the data related to cancerous brain tumours in the UK in populations aged under 40.
(This data only refers to the UK because, in countries where access to diagnostic tools and effective treatments for diseases is limited, mortality rates from other diseases are often higher.)
Our Senior Evidence and Insights Analyst, Cosette Davey, explained: “To see this information we selected UK as the location. Then we filtered the data for all causes listed under neoplasms including malignant brain and central nervous system tumours, and the age ranges 0-14 and 15-39 years.”
Cosette has also compared this data with previous years and with the figures for other diseases to create the graph below. It shows that deaths for most common cancers have been decreasing overall – until a blip during Covid-19 when there was, perhaps, a drop in reporting.
The most recent figures are from 2021 when there were 372 deaths in the under 40s in the UK who had been diagnosed with malignant brain and central nervous system tumours.
Comparing mortality rates between brain tumours and leukaemia
Next, we’ve drawn a comparison with another disease that’s commonly perceived to have high mortality rates among children and young people: leukaemia.
This graph shows that 257 deaths from leukaemia were reported in the under 40s in 2021 – that’s 115 fewer than in brain and central nervous system tumours. And it indicates that it was in the late 1980s that the mortality rate for leukaemia began to decline below that for brain tumours in the UK.
What happened in that era? Arguably, these two diseases are vastly different. But they bear comparison because both are complex, prevalent in younger populations and affect vital, all-encompassing bodily systems.
How did progress in leukaemia treatment gain ground?
When Susan Eastwood – whose family founded Blood Cancer UK – was diagnosed with a type of leukaemia in 1960, just one in 10 people survived the disease. Today, nine out of 10 children diagnosed with her type of leukaemia survive.
In the early 2000s, just 41% of people diagnosed with leukaemia survived for five years. That now stands at 52%. And the increase in survival rates for blood cancer is much faster than for cancer overall.
One of the drivers behind that progress was that there was a clear, urgent need for kinder, better treatment. This was something US scientist Dr Brian Druker began focusing on in the 1990s. His interest was in a type of blood cancer called chronic myelogenous leukaemia (CML).
He wanted to find an alternative to chemotherapy for patients with CML. A treatment that would affect cancer cells but leave healthy cells intact. To do that, he needed a targeted therapy – a drug that would block a protein called BCR-ABL1, which is produced by a fault in chromosome 22. It had previously been identified by a team who named it the Philadelphia chromosome
It can cause immature white blood cells to grow uncontrollably and build up in the bone marrow and blood. The Philadelphia chromosome is found in the bone marrow cells of 95% of people with CML and and some people with acute lymphocytic leukaemia (ALL) or acute myelogenous leukaemia (AML).
From the lab to clinical trials
Working with Dr Nicholas Lydon, who led a drug discovery group at a pharmaceutical company, the pair investigated hundreds of compounds looking for one that blocked the protein but didn’t damage other cells. Eventually, they found a formula that inhibited the growth and division of CML cells. STI-571, later renamed imatinib, blocks the activity of the BCR-ABL fusion protein.
In 1998, Dr Druker and his colleagues tested imatinib – branded Gleevac – in a phase 1 clinical trial partially funded by the US NationaI Cancer Institute. The results showed that the drug caused cancer to disappear in most patients with CML who were in the early, or chronic, phase of the disease. Five years later, 98% of patients from this trial were still in remission.
Subsequent clinical trials found similar results in larger groups of patients. Compared with standard treatments for CML, imatinib also improved patients’ quality of life and caused fewer side effects. Bingo!
Based on this evidence, in 2001, the Food and Drug Administration approved imatinib to treat patients who had CML with the Philadelphia chromosome, which produces the fusion protein. Today, someone with CML who is in remission after two years of imatinib treatment has the same life expectancy as someone healthy. You can read more about this here.
Since then, there have been other drug discoveries to treat blood cancers like AML and ALL that were previously treated with chemotherapy and stem cell transplants, explained here.
A National Brain Tumour Strategy
This sequence of events is what we are relentlessly campaigning for. We need more effective treatments for brain tumours brought about by the scientific, financial and political will to painstakingly research the condition. Then we need mechanisms in place to speed up the process of getting promising new treatments from the laboratory to clinics, as well as funding for phase 1 and then broader clinical trials.
With decision-making aided by our advisory boards, The Brain Tumour Charity has committed £57m to ground-breaking research projects since 2015, and we’re determined to do more. Click here for information on the projects we’re currently funding.
Too often, research into brain tumours has been left behind because of a lack of commitment to early-stage research, translational research or vital clinical trials.
Dr Simon Newman, Chief Scientific Officer, The Brain Tumour Charity
We urgently need a well-resourced and more efficient pipeline to deliver better interventions into clinical trials and ensure the right incentives are in place for those successful drugs to receive timely regulatory approval. This will need to be a joint effort by government, charities and industry
Click here to read more about our call for a National Brain Tumour Strategy.
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