World cancer research day – showcasing NDRS Cancer Research

September 24th marks World Cancer Research day. This day provides an opportunity to raise awareness about the importance of research and data in diagnosing cancer early and improving cancer treatments.

NDRS provides an essential role in supporting cancer research. We collect patient data from NHS clinical teams in England which is then used by clinicians, charities and academics to carry out research and improve cancer diagnosis and treatment.

Here are some examples of how NDRS patient data has contributed to cancer research:

Ovarian cancer patients are often diagnosed late

In 2018, the charity Target Ovarian Cancer analysed non-identifiable NDRS patient data. They found that 27% of women diagnosed with ovarian cancer are picked up as an emergency.  This can mean that the disease is quite advanced and there are not as many treatments available to these women. The data also showed that 20% of women diagnosed with ovarian cancer did not receive the main treatments of chemotherapy, radiotherapy or surgery. This could be because many women are too unwell to start treatment because they have been diagnosed too late.

Research like this helps the NHS understand where to improve care and support for gynaecological cancer patients. Without patient data it would not be possible to know how women are diagnosed, what treatment they are receiving, and if things are getting better.

You can read more about this story here.

Lynch syndrome and bowel cancer research

The genomics and molecular team at NDRS helped create the first ever national Lynch syndrome registry in partnership with Newcastle University and Bowel Cancer UK. Lynch syndrome is a genetic condition that increases the lifetime risk of bowel cancer up to 80%. This research found that people with Lynch Syndrome reduced their risk of bowel cancer by taking Aspirin for two years.

Click here to watch the webinar that we hosted in April 2021 which explains how patient data was collected and used for this research.

The ‘Predict’ breast cancer tool

NDRS patient data was analysed to understand how well different treatments have worked in the past for breast cancer patients after they had surgery. The results were gathered to create an online tool called Predict which helps new breast cancer patients and their doctors choose a treatment plan together. The tool uses data about the survival of women with similar characteristics and medical history to show patients and doctors the likely benefit of different types of treatment. Then doctors and patients can decide if the benefits of a treatment outweigh the side effects of that treatment and choose the best plan together. Predict is now used as a clinical consultation tool in the NHS and has also been expanded to cover prostate cancer. Read the full story here.

Are there avoidable delays to diagnosis?

Delays in diagnosing cancer can lead to poor survival rates and reduced quality of life. GP reported data showed that there were avoidable delays in diagnoses. As a result of this research, data from the National Cancer Diagnosis Audit is being used to better understand the avoidable delays to diagnosis and find solutions to help improve the diagnostic pathway in some cases.

Research looking into the diagnostic pathway can help to improve areas where there are delays and get patient access to treatment quicker. You can read more about this publication here.

Acknowledgement statement

NDRS work uses data that has been provided by patients and collected by the NHS as part of their care and support.

Patient data helps us understand cancer. We can improve diagnosis and treatment of cancer by looking at how and where people were diagnosed, and the outcome of different treatments. We can also compare the survival rates and outcomes of patients in England with other countries.

World Cancer Research day is a fantastic opportunity to look back on and celebrate what we have achieved in partnership with cancer charities, researchers, clinicians and patients.