NDRS Newsletter │21 February 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. 
  
This month we highlight the cancer survival statistics and share details of a new study using data from both NCRAS and NCARDRS investigating immune responses to the COVID-19 vaccine.

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 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
New Head of Analysis
In November we welcomed Kate Fleming as the new Head of Analysis. Kate is an epidemiologist by background and joins us after nearly 20 years of working in academia and NHS Arm’s length bodies, and has vast experience using health data for research in a variety of clinical, public health and methodological areas. 

“Thank you for the warm welcome into NDRS and NHS Digital. Things you might like to know about me: I was born, live and work in Liverpool; I have 3 school aged children (13,10,6) and work flexibly to accommodate my caring responsibilities; I am a huge Eurovision song contest nerd; and I aspire to the motto of my beloved Everton FC “nil satis nisi optimum”. I’m really excited by the possibilities that are in front of us regarding new data linkages, new methods of data visualisation and more. I will be working with the excellent team here on how we can improve our use of cancer, congenital anomaly and rare diseases data, and ultimately use the knowledge and expertise within NDRS to show the utility more broadly of well collected, quality assured health data to provide accessible intelligence for action.”
Data release update
You may be aware at the current time access requests for NDRS data are either being processed via the UKHSA Office for Data Release (ODR) or in some instances via the NHS Digital Data Access Request Service (DARS) and colleagues across both organisations are working hard to process applications.

We acknowledge that the current hybrid arrangement is not sustainable, and we are exploring how we can bring the data release of NDRS data entirely in-house to NHS Digital over the coming months and to review the existing processes to create a user need based service.

We will bring your further updates as this work progresses. In the meantime, if you require further information regarding the current routes for NDRS data release please contact NDRSenquiries@nhs.net
Data releases and publications
Cancer survival in England, cancers diagnosed 2015 to 2019, followed up to 2020 report released
The Cancer survival in England, cancers diagnosed 2015 to 2019, followed up to 2020 report and data tables were published on 3rd February. This is the first time this report has been published on the NHS Digital website. An interactive tool on CancerData is also available.
 
This release summarises the survival of adults diagnosed with cancer in England between 2015 and 2019 and followed to 2020. Adult cancer net survival estimates are presented by cancer group, age, gender, stage at diagnosis and geography. For the first time, adult survival by Index of Multiple Deprivation quintile is presented. Also presented are overall survival estimates for children diagnosed with cancer in England between 2002 and 2019 and followed to 2020.
 
Alongside the report, an Impact paper on the changes to cancer survival methodology has been published. 
A graph showing ranges in 1 year survival showing minimum and maximum by geography type

Cancer Survival Statistics media coverage
On World Cancer Day, with the support of colleagues in NHS Digital Communications, we are delighted to have achieved an impressive level of media coverage including pick up with The Guardian and on social media channels where 73 users sent 80 tweets which generated over 666,000 impressions.

Liz Earle MBE retweeted NHS Digitals post “Wonderful news to share #postivity. Let’s hope children’s cancer rates continue to improve ever upwards!”

We had lots of cancer charities responding including Little Princess Trust, Youth Cancer Trust Forward, Candle Lighters and Grace Kelly Childhood Cancer Trust.

We also shared the news item through to our newsletter subscription list and of those that opened the newsletter 94.4% clicked through to the report
A tweet by NHS Digital on World Cancer Day
Rapid Cancer Registration Data dashboards
We continue to welcome feedback on the content or functionality of the two Rapid Cancer Registration Data (RCRD) COVID-19 Incidence and Treatment dashboards.

The latest monthly update included diagnoses up to September 2021 and updated data on the proportion of patients recorded as receiving chemotherapy or radiotherapy. The dashboards are available at: CancerData (publicly available) and CancerStats2 (requires a secure HSCN connection to access).
A graph showing new cancer diagnoses in England, from January 2019 to September 2021

The Melody study
The MELODY study is recruiting more than 35,000 immunocompromised people to determine their immune response to Covid-19 vaccination and future risk of infection, hospitalisation and survival over six months. Using data held by the National Disease Registration Service 12,000 people with rare autoimmune diseases and 12,000 people with blood cancers have begun to be invited to participate in the study. The study is already open to people who have had organ transplants.
 
It is being funded by the Medical Research Council in collaboration with several health charities including Kidney Research UK, Blood Cancer UK, Vasculitis UK, and the Cystic Fibrosis Trust, and it is led by researchers at Imperial College London.
 
Immunocompromised people tend to be the least likely to develop an antibody response following vaccination against Covid-19, but there are huge variations between individuals and different immune conditions.
 
This study has been made possible by work undertaken by the RECORDER project, a collaboration between the University of Nottingham, Nottingham University Hospitals NHS Trust and the National Disease Registration Service at NHS Digital. This is an example of pioneering research in rare diseases, and is helping to deliver the ambitions of the UK Rare Diseases Framework.
 
Dr Aisling McMahon, executive director of research, innovation and policy at Kidney Research UK said, “On behalf of all of the charity partners, we are thrilled to be supporting this important research to identify patients who remain unprotected after three or four doses of Covid-19 vaccine. While vaccination has demonstrated significant benefits in reducing risk for many patients, it is vital that we identify patients who are still vulnerable to Covid-19 to allow healthcare professionals to suggest alternative protective measures and to highlight those patients who may benefit from new prophylactic treatments.”
An image of people
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