NDRS Newsletter │08 September 2022
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 Digital 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
New NDRS website
We are very pleased to share with you our new NDRS website in private beta for your feedback and suggestions.

The new site is part of our digital transformation programme to consolidate existing websites including www.ncin.org and www.ndrs.nhs.uk, to create a single point of access for all publicly available online content.
 
This means the new site will provide:
  • an easier to navigate single website for all NDRS online content
  • a website and content that is easier to discover through search engines e.g. google
  • the latest and most up to date NDRS content
  • fully accessible content that meets the accessibility requirements for the Government Digital Service standards

We engaged with many of our staff and stakeholders to develop the new site from initial consultation to understand user needs, feedback on design and functionality and user testing for navigation and accessibility. Thank you to everyone that has been involved and supported us along the way.
 
The private beta phase allows us to share the site with you to gain your feedback and suggestions as we continue to work on the site, refining the content and functionality. We would be grateful for any feedback you have. You can find the feedback from via a link at the top of the new site. 

If you have any further questions, please do not hesitate to contact the team at ndrsenquiries@nhs.net
Data releases and publications
Incidence and outcomes for breast sarcoma
NDRS working in partnership with UCL on a grant funded by Sarcoma-UK and led by Dr Sandra Strauss recently published a paper looking at incidence and outcomes for breast sarcomas. This is the first population-based study to describe clinical and pathological characteristics of breast sarcoma in England and is the most comprehensive internationally. The paper describes how patients treated at specialist sarcoma centres are more likely to have a biopsy prior to surgery (83% versus 72%, p < 0.05) and less likely to require multiple operations (26% versus 41%, p < 0.05). As such, the authors recommend breast sarcomas are discussed at a sarcoma multi-disciplinary team meeting early in their pathway and surgery is considered at sarcoma specialist centre where possible
An icon showing a breast
Cancer prevention in people with Lynch syndrome
NCRAS data has been used to follow up long term outcomes for people participating in an important cancer prevention trial. The CAPP2 clinical trial of aspirin and resistant starch looked at cancer incidence in around 1000 patients with Lynch syndrome (LS) – these people have a high genetic risk of bowel, womb and other cancers, including upper gut tumours.

The NDRS Molecular & Genomics Team has been working closely with Professor Sir John Burn and his team at Newcastle University. We linked the CAPP2 trial records to gold standard English and Welsh cancer registration data, to see what tumours had developed over the 10-20 years since each patient started on the trial.

In a previous publication in The Lancet, the CAPP2 / NCRAS work showed that taking a daily aspirin for two years could halve the incidence of colorectal cancer over the next decade in people with LS. Our new paper in Cancer Prevention Research showed that consumption of resistant starch (equivalent to a daily banana) prevented 60% of upper gut cancers. Everyone in the trial was included in the analysis, even if they dropped out early: this is known as ‘intention to treat’ and is the highest bar for a clinical trial.

Resistant starch is defined as carbohydrates that can be fermented by gut bacteria. It probably alters the mix of microbes living in the gut, encouraging the ‘good bacteria’ to predominate. Both aspirin and resistant starch are cheap, readily available, and safe. It’s a great example of using NDRS data to support cutting edge clinical research to help those people most vulnerable to cancer.
An icon showing diagnosis
Rapid Cancer Registration Data (RCRD) COVID-19 Incidence and Treatment dashboards updated
Our two Rapid Cancer Registration Data (RCRD) COVID-19 Incidence and Treatment dashboards continue to be updated with data for recent months. The latest monthly update included diagnoses up to May 2022 and treatment data until at least December 2021. The dashboards are available at: CancerData (publicly available) and CancerStats2 (requires a secure HSCN connection to access). In recent months, we have continued update the way we produce the RCRD, to improve the quality of the data so that it better matches the gold-standard cancer registration data; this has included updates to the stage data for stomach and oesophageal cancers. We have also recently added more surgery data, for cancers of the anus, gall bladder and small intestine and for endocrine tumours.
An icon showing data
Cancer Quality of life survey results to be updated
We will publish updated results in our Cancer Quality of Life Survey dashboard in the next few days. This update will, for the first time, include responses for all cancer types included in the Cancer Quality of Life Survey. Where possible, there will also be new filters by Integrated Care Board and Trust at diagnosis, and breakdowns by ethnic group, deprivation and stage at diagnosis.
An icon showing quality
The ‘Breast screening After Radiotherapy Dataset’ (BARD) project
One of the most common cancers in children, teenagers or young adults is Hodgkin lymphoma which affects the lymphatic system. Female patients who are given radiotherapy to their chests as part of their treatment for Hodgkin lymphoma are at increased risk of being diagnosed with breast cancer in later life. NDRS recently used its RadioTherapy Data Set (RTDS) to identify the latest cohort of former cancer patients in the Breast screening After Radiotherapy Dataset who will be called to start breast screening at an earlier age than the rest of the population.
An icon showing radiotherapy
New guidelines for kidney cancer
NDRS has also recently published research in partnership with Health Data Insight and Kidney Cancer UK which NHS England’s National Cancer Programme has used as evidence to commission NICE to develop their first guidelines and quality standards that are specific to kidney cancer.
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NHS Fetal Anomaly Screening Programme publication
A publication describing NCARDRS work with the NHS Fetal Anomaly Screening Programme was published in BJOG: An International Journal of Obstetrics and Gynaecology.
The work, a retrospective audit of 12,694 diagnoses across a three-year national cohort. measured condition-specific detection rates for 14 physical conditions screened for by the NHS fetal anomaly screening programme (FASP) fetal anomaly (FA) ultrasound scan (20 week scan). The paper concludes that the performance of the FA scan is above expectations set in 2010 for most conditions. For the remaining conditions, the majority of fetuses and babies are detected prior to the FA scan.
An icon showing a foetus
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