NDRS Newsletter 21 September 2021
NDRS News
Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events. 
  
This month, NDRS published a new data story on the Virtual Cardio-Oncology Research Initiative (VICORI). We also share the publication of the national specialty report for rheumatology and the launch of the National Cancer Research Institute's (NCRI) cancer and COVID-19 dashboard.

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

NDRS is made up of 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
NDRS transition to NHS Digital
On 1st October 2021, as part of the government’s strategy to transform the public health system in England, responsibility for the management of the National Disease Registration Service (NDRS) will transfer from Public Health England (PHE) to NHS Digital. NHS Digital will become the data controller for this data. Bringing together NDRS’ and NHS Digital’ data and technical expertise will provide significant benefits for patients, clinicians, and the wider health and social care system.
 
NDRS and NHS Digital colleagues are working hard to ensure that the transition of services is as smooth as possible for NDRS’ customers and its staff. There will be minimal changes to current processes from 1st of October and all current communication channels will be maintained. The current pause on new data requests to the Office for Data Release (ODR) will be lifted as soon as possible. Please direct any questions to NDRSengagement@phe.gov.uk.
Data releases and publications
Data story published on the Virtual Cardio-Oncology Research Initiative (VICORI)
NDRS has published a data story on the VICORI project led by researchers at the University of Leicester.

Data stories explain how NDRS uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies. This data story was produced in collaboration with ‘use MY data’, which is an independent patient movement focused on promoting the benefits of using patient data to save lives and improve outcomes.
 
The Virtual Cardio-Oncology Research Initiative (VICORI) uses patient data to study the link between cancer and cardiovascular disease. They recently studied the treatment and outcome of patients with cardiovascular disease and non-small-cell lung cancer. The study found that these patients were less likely to have a resection, and were more likely to die.
 
This data story is part of a wider series available on the NDRS website. If you have any ideas for future data stories, let us know by emailing NDRSengagement@phe.gov.uk.
The VICORI logo
National Audit of Breast Cancer in Older Patients (NABCOP) 2021 Annual Report published
Just a reminder that NABCOP has published its 2021 Annual Report. This is a collaboration between the Association of Breast Surgery (ABS) and the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons (RCS) commissioned by the Health Quality Improvement Partnership (HQIP), with NCRAS providing the data for England. We would like to highlight the following sections and resources:


NCRAS received praise in the report from Julie Doughty, the President of the Association of Breast Surgery, that:

“Despite the pressures on staff, timely data were made available to the NABCOP on patients diagnosed with breast cancer. This is a great achievement and is due to the enormous efforts of the cancer intelligence analysts and cancer information specialists at the National Cancer Registration and Analysis Service… They supplied data on women diagnosed during the COVID-19 pandemic in 2020 using the Rapid Cancer Registration Dataset introduced by NCRAS... They are to be congratulated on their efforts.”
The first page of the NABCOP Annual Report 2021
Report published on care for people with rheumatic and musculoskeletal disorders
NCARDRS co-authored the Getting It Right First Time (GIRFT) programme's national specialty report for rheumatology, which has recently been published.

Based on multiple national data sources, questionnaires to 134 trusts and visits to 62 units across England, the report details findings and recommendations to improve the timeliness and quality of care for the people with rheumatic and musculoskeletal disorders.

The report’s recommendations focus on strengthening the care pathways for conditions with the greatest risk of avoidable harm if not diagnosed and treated, including inflammatory arthritis, septic arthritis and some rare autoimmune diseases.

Recommendations include promoting rare disease registration with NDRS to work towards automated reporting for rare diseases, so that population-based data can be used to identify geographical variation in high cost drug treatment, care and outcomes as well as to audit quality standards.
The GIRFT logo
Cancer and COVID-19 dashboard launched
The National Cancer Research Institute (NCRI) has launched a dashboard of cancer and COVID-19 research which lists research projects looking at the impact of COVID-19 on cancer care and patients. Working together with Cancer Research UK, NCRAS and the Cancer Alliance Data, Evaluation and Analysis Service (CADEAS), 89 studies have been identified and uploaded to the dashboard.

Researchers with studies in the area of cancer and COVID-19 are encouraged to upload their research via the website.
The NCRI Cancer and COVID-19 dashboard promotion image
Radiotherapy Dataset (RTDS) and Systemic Anti-Cancer Therapy (SACT) COVID-19 dashboard updated
The RTDS and SACT public dashboards were updated at the end of last month. The dashboards share data on how radiotherapy, chemotherapy and other SACT activity has been impacted during the COVID-19 pandemic, and are available on the CancerData website.

The data periods presented are dictated by NHS Trust submissions, with the dashboards only presenting data from months with greater than 90% of NHS Trusts reporting activity. The RTDS dashboard presents data from 1st January 2019 to 31st May 2021, while the SACT dashboard presents data from 1st January 2019 to 31st March 2021.
An icon of COVID-19
Latest 30-day mortality post systemic anti-cancer therapy (SACT) workbook published
We published our latest 30-day mortality post SACT workbook which reviews patients diagnosed between 2010 and 2018 who received treatment for follicular lymphoma in January 2017 to November 2020.

The latest workbook and previous versions are available on the SACT website and interactive app on CancerData.

The workbook contains case-mix adjusted mortality rates using data submitted by NHS trusts through their monthly routine SACT data uploads. These results were initially shared with NHS trusts earlier in the year, and comments from the trust have been included in the companion brief published alongside the workbook.
A graph included in the workbook
Study on haemophagocytic lymphohistiocytosis (HLH) in England published
This month, NCARDRS co-authored a study on HLH in England which was published in the British Journal of Haematology. Funded by the patient charity Histio UK, the paper describes how to identify people diagnosed with HLH in the routinely collected data, allowing population-based research and epidemiology to be undertaken on this rare and often fatal disease.
The charity Histio UK's logo
First official national keratinocyte cancer report published
NDRS published the first official national keratinocyte cancer report. The partnership was funded by the British Association of Dermatologists with collaboration from Scottish, Welsh and Northern Irish cancer registries.

The study found that the incidence of cutaneous squamous cell carcinoma continues to rise in all UK countries, however basal cell carcinoma incidence does not increase consistently. We also report the first ever lifetime incidence of non-melanoma skin cancers (NMSC), which indicates that 1 in 5 people in England will develop a NMSC at some point in their lifetime.
An icon of skin cancer
NDRS Publication Library updated
We have recently updated our publication library to include all academic publications from January 2018 to December 2020. It includes publications by NCRAS and NCARDRS. We are currently working on adding all 2021 publications, which will be published at the end of the calendar year.

For any enquiries relating to this document or for further information please email NDRSengagement@phe.gov.uk.
The NDRS Publications Library header
First atlas of variation in risk factors and healthcare for vision in England published
NDRS contributed to the first atlas of variation in risk factors and healthcare for vision in England, which was published last week week. It contains 32 indicators of eye health and presents data in a format to show geographical variation of each indicator. Data from NDRS was supplied for incidence and age standardised rates for eye cancers which can be seen between pages 129 and 136. There is also an interactive tool which allows users to view maps, charts, time series data and associated statistics across all the indicators presented within the atlas. This atlas will identify opportunities and enhance efforts to improve outcomes from eye diseases.
The cover of 'Atlas of variation in risk factors and healthcare for vision in England August 2021'
Upcoming data releases and publications
National Post Colonoscopy Colorectal Cancer (PCCRC) Audit to be launched at the end of September
We are pleased to announce that the PCCRC Audit will be launched at the end of September. The audit is funded by the charity Bowel Cancer UK and managed by NCRAS and Health Data Insight.

The audit follows the recommendation made by the World Endoscopy Organisation (WEO) and the requirement of the Joint Advisory Group on GI Endoscopy (JAG) to review PCCRCs following a colonoscopy that did not show cancer.

To help services identify and audit PCCRCs, NCRAS have developed a national reporting system. PCCRCs are identified using cancer registry datasets and will be presented to the users at the trust where the colonoscopy was performed via the secure portal. The portal has an audit tool designed to help determine the most plausible explanation for the PCCRC as defined by the WEO.

If you would like further information, please contact natasha.wood@phe.gov.uk.
An icon of a colon
Events
NDRS Autumn Webinar Series
The NDRS Autumn webinar series has kicked off to a great start! We have run 3 so far.

If you missed them, you can watch the recordings and see the slides here:




Please sign up to the upcoming webinars below:

Thursday 23rd September, 12 to 1pm

Thursday 7th October, 12 to 1pm

Thursday 14th October, 12 to 1pm
Further news
Dr Megan Rutter awarded a Versus Arthritis Clinical Research Fellowship
Dr Megan Rutter, honorary clinical research fellow with NCARDRS and PhD student with the University of Nottingham, was awarded a Versus Arthritis Clinical Research Fellowship. Working as part of the RECORDER project, co-supervised by the project lead Dr Fiona Pearce and by Dr Peter Lanyon, NCARDRS Clinical Lead, her work will enable further development of the methodology to register people with rare diseases and understand the impact of the COVID-19 on their health, using rare autoimmune rheumatic diseases as an exemplar for late-onset, non-genetic conditions. 
A photo of Dr Megan Rutter
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