October is breast cancer awareness month. We wanted to use this opportunity to highlight some of the work we have produced to support improvements for breast cancer.

We have worked with the Clinical Effectiveness Unit at the Royal College of Surgeons of England (RCS) and the Association of Breast Surgery (ABS) to support the National Audit of Breast Cancer in Older Patients (NABCOP). The audit aims to support patients, clinicians, healthcare providers, and commissioners in order to improve breast cancer care, as well as publish comparative information on outcomes and care processes from English NHS trusts and Welsh local health boards. To find out more and view the most recent NABCOP Annual Report and NABCOP Public and Patient Annual Report visit the NABCOP website.

Breast screening After Radiotherapy Dataset (BARD) is a partnership programme with The Christie NHS Foundation Trust and The University of Manchester. BARD is a confidential database of women in England who have received radiotherapy involving breast tissue when aged between 10 to 35 years, which aims to improve long term outcomes in this patient population. It has been set up to ensure all patients at increased risk of breast cancer following radiotherapy are offered breast screening in line with national guidelines. It is also helping to ensure that patients are provided with the relevant information about the risk of breast cancer after radiotherapy, breast screening and research in the field. Find out more about BARD here

If you have any questions about these projects or our other work please contact us at NDRSenquiries@nhs.net

A paper on the epidemiology of Langerhans cell histiocytosis (LCH) is published in the British Journal of Haematology, available online (open access). This analysis is the largest population-based study to date to provide contemporary and comprehensive epidemiological estimates of all ICD-O-3 coded LCH. It shows that a higher incidence is associated with younger age and male sex. Survival is excellent in children, but older age is associated with poorer overall survival. For the first time this study shows that a higher incidence and lower survival are associated with deprivation. There will inevitably be other environmental factors and associations yet to be identified, and the continued standardised data collection described in this study will allow further evaluation of data over time. This will be increasingly important with developments in LCH management following the large collaborative international trials such as LCH IV.

The Molecular & Genomics Team has contributed to a ground-breaking study of the role of air pollution in non-small cell lung cancer (NSCLC) in non-smokers. NDRS data on Epidermal Growth Factor Receptor (EGFR) mutations in lung cancer was linked by patient postcode to air pollution data held by the Centre for Radiation, Chemical and Environmental Hazards (CRCE); previously part of Public Health England (PHE). This showed that rates of EGFR-mutated lung cancer correlated with higher air pollution levels (based on PM2.5; i.e., particles that are small enough to be inhaled). Lab studies on human lung tissue samples and mice with EGFR gene mutations showed that lung cells with EGFR mutations were dormant until air pollution caused inflammation in the lungs. It is the inflammatory signals that transform the mutated cells into cancer cells. The work opens up avenues to explore new treatment approaches to lung cancer in non-smokers and shows how air pollution is affecting human health as well as the environment. The work was presented by Professor Charles Swanton, of the Francis Crick Institute, at the European Society of Medical Oncology (ESMO) Congress in Paris on 10th September.

Our Cancer Quality of Life Survey dashboard has been updated to include data for invites up to June 2022. This update, for the first time, includes responses for all cancer types included in the Cancer Quality of Life Survey, with results provided for a wider range of individual cancer types. As previously, results can be filtered by NHS region and Cancer Alliance, and broken down by age-group or sex. With this update, results can now also be filtered by Integrated Care Board or Trust at diagnosis, and broken down by ethnic group, deprivation area or stage at diagnosis.

NCARDRS colleagues attended the International Clearing House or Birth Defect Surveillance and Research conference in Bologna, Italy. This is an annual meeting of congenital anomaly registers from around the world.  The aim of the ICBDSR is conducting worldwide surveillance and research to prevent birth defects and to ameliorate their consequences.

They gave two oral presentations and one poster presentation. 1) Detection Rates of the Fetal Anomaly Screening Programme for all maternity units across England (2) Congenital Diaphragmatic Hernia: What can NCARDRS tell us? Focusing on how even basic epidemiology can support clinical care and service planning, with the opportunity to understand the clinical picture more through further data linkage 3) A poster on establishing a baseline assessment of neural tube defects in advance of the introduction of mandatory folate fortification in England. We will be one of only 11 countries in the world able to do pre and post surveillance on the effect of this valuable Public Health intervention.

It was really positively received by other registries, with lots of interest and demonstrated NCARDRS as a world leading national disease register.

On Thursday 20 October, the NDRS will be publishing the National Statistics on Cancer Registration Statistics in England. This publication reports on newly diagnosed cancers registered in England in addition to cancer deaths registered in England during 2020. For the first time, this publication will include cancer mortality by deprivation and cancer site. Cancer incidence rates will be published by gender, age group, geographic region, deprivation and stage at diagnosis for selected cancer sites, and cancer mortality rates by gender, deprivation and age group. A planned further publication of breakdowns by month of diagnosis will be announced shortly.

Dr Peter Lanyon, Clinical Lead for NCARDRS, was interviewed for the RCP Commentary magazine, alongside Dr Megan Rutter from the RECORDER project at the University of Nottingham. They discussed the needs of people with rare diseases and the power of disease registration to improve care and outcomes. Commentary is the membership magazine for the Royal College of Physicians London and is sent to 31,400 readers. This issue is also available in print.