May is bladder cancer awareness month. At NDRS we wanted to use this opportunity to tell you about the Get Data Out (GDO) programme which publishes in-depth, anonymous data about cancer to support research

The GDO programme publishes detailed statistics on Bladder, Urethra, Renal Pelvis and Ureter. Statistics are presented on small groups of patients, defined both by characteristics of the patients (such as their age and sex) and by features of their tumours (such as the stage or location). The GDO groups present information on incidence, treatment, routes to diagnosis and survival for all these groups. For bladder cancer, groups are defined by the behaviour of the tumour, whether the tumour is urothelial or not, whether the tumour is muscle invasive or not, and for early stage tumours the grade of the tumour. This was developed by working with clinicians and charities. The full information and tree diagram can be found on our website.

Over recent years, NCRAS has also collaborated on two studies about bladder cancer treatment and survival, and quality of life. A baseline analysis following the introduction of the 2015 NICE bladder guidelines, reported in the journal paper Treatment allocation and survival in patients diagnosed with non-metastatic muscle-invasive bladder cancer: an analysis of a National patient cohort in England, found that just over half of the patients received curative-intent treatment, with improved outcomes for the group of those who received neoadjuvant chemotherapy. The study published in the journal paper Quality of Life After Bladder Cancer: A Cross-sectional Survey of Patient-reported Outcomes found that quality of life after bladder cancer is worse than after other pelvic cancers, and that quality of life is largely unaffected by stage and treatment, but more so by age and co-morbidity.

We are keen to work with researchers and analysts to understand what this data tells us further, and would love to hear about your experiences of using data to better understand bladder cancer.

Since July 2016 ,the National Institute for Health and Care Excellence (NICE) has been appraising all new cancer drugs, including those made available through the new Cancer Drugs Fund (CDF). The CDF aims to make promising treatments available to patients while NICE decides whether treatments should be approved routinely on the NHS.

A fundamental element, integral to the success of the CDF, is the cancer data partnership between NHS England and NHS Improvement and NHS Digital. The partnership provides insights into patient outcomes, including duration of treatment and survival, based on routinely reported data, including data from the Systemic Anti-Cancer Therapy dataset (SACT).

Our CDF reports, together with clinical trials data, inform NICE committee decision making on whether a drug should be made available to patients routinely on the NHS.

Following two recent NICE re-appraisals, the NDRS team have had two reports published along with the NICE committee papers: Niraparib for maintenance treatment of platinum-sensitive ovarian cancer after second response to chemotherapy and Daratumumab monotherapy for treating relapsed and refractory multiple myeloma, both of which have been approved for routine commissioning. These reports show how the SACT dataset provides essential real-world evidence to inform committee decisions.

The NABCOP is a national clinical audit run by the Association of Breast Surgery (ABS) and the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS). NDRS provide the English data to the NABCOP. The 2022 NABCOP Annual Report and 2022 NABCOP Patient and Public Report were published on 12 May 2022. The reports are available to view here along with supplementary materials.

This year the NABCOP has reported on: