NDRS Newsletter │31 January 2024

NDRS News

Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events. 

 

The National Disease Registration Service is part of NHS England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.



NDRS includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). NDRS uses data provided by patients and collected by the NHS as part of their care and support. NDRS uses this data to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.


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Updates from NDRS

January is cervical cancer awareness month

In October 2023 we published our national statistics on Cancer Registrations in England for 2021. The statistics showed that 21,353 females were diagnosed with cervical carcinoma in situ. Carcinoma in situ is sometimes called stage 0 cancer or 'in situ neoplasm' means that there is a group of abnormal cells in an area of the body. These cells may develop into cancer at some point in the future. The report also showed that 2760 females were diagnosed with cancer of the cervix. Cancer Registrations Statistics, England 2021- First release, counts only.


In November 2023 the NHS pledged to eliminate cervical cancer by 2040 for the first time ever, which could save thousands of lives every year in England. The Human Papillomavirus (HPV) vaccination prevents invasive strains of the virus, known to cause almost all cervical cancers, as well as some mouth and throat cancers. It is given to both girls and boys in secondary school to protect them against catching the HPV infection and developing into pre-cancerous and cancer cells. To eliminate cervical cancer by 2040, the NHS needs to ensure as many people as possible are being vaccinated against HPV, while also coming forward for cervical screening. Last week, NHS England urged more young people to take up the HPV vaccine to meet the NHS cervical cancer elimination goal


The effects of the national HPV vaccination programme in England, UK, on cervical cancer and grade 3 cervical intraepithelial neoplasia incidence: a register-based observational study. This paper used cancer registration data and shows that the HPV vaccination programme has successfully almost eliminated cervical cancer in women born after 1 September 1995.

Data releases and publications

Cohort profile: the National Congenital Anomaly Registration Dataset in England

The NCARDRS team have recently published a cohort profile describing NDRS's Congenital Anomaly Registration Dataset in BMJ Open. This peer-reviewed, open-access publication describes the data collection, registration processes, data quality, current, prospective and potential use of the congenital anomaly dataset. The congenital anomaly register, the largest register of its kind globally, has been national across England since 2018 (approximately 21 000 anomalies registered from 600 000 total births per year), enabling the calculation of accurate estimates of prevalence, even for rare congenital anomalies.

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Figure 1 in the publication which shows the regional structure of NCARDRS and the proportion of the birth population of England that was covered by congenital anomaly registration. NCARDRS, National Congenital Anomaly and Rare Disease Registration Service

Paper looking at long-term risks of being diagnosed with invasive breast cancer following treatment for non-invasive breast cancer published

Last week a paper looking at the long-term risks of being diagnosed with invasive breast cancer following treatment for non-invasive breast cancer was published.


The paper was published with a linked editorial which concludes that the paper adds evidence to the debate on overdiagnosis (and overtreatment) of non-invasive breast cancer and suggests longer-term follow-up than is currently offered for non-invasive breast cancer patients may be required.

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An icon showing a breast

Update to radiotherapy activity data

The radiotherapy dashboards have now been updated with a further year of radiotherapy activity data and Intensity-modulated radiation therapy (IMRT) rates. Data is now available from 2009-2023 financial year at a national and alliance level with filters to cut the data by age groups, gender, tumour groupings and intent of treatment. 

View radiotherapy data page 

A screenshot of the radiotherapy episodes dashboard

Cholangiocarcinoma paper published

The World Journal of Gastrointestinal Oncology published a paper on geographical variation in cholangiocarcinoma treatment in England. The study has come about through partnership between HDI, NCRAS and AMMF. It considers variation in the proportions of cholangiocarcinoma patients that received surgery, systemic therapy and stent insertion by Cancer Alliance and other patient and tumour factors. Half of the cholangiocarcinoma patient cohort received none of the treatments considered, and wide variation was observed in the proportions receiving stent insertion in the absence of potentially curative surgery.

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Events

MELODY Study

An image showing a person using a laptop

MELODY, a ground-breaking rare disease study, using NDRS and NHS data to enable mass-recruitment to important COVID-19 research of people with rare diseases, blood cancers and organ transplants by inviting them directly. Adam Taylor, Health Data Scientist at the University of Nottingham will be showcasing the MELODY project at the HDR-UK Midlands ‘Using data to improve care’ webinar event. 

More information and to book a place
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