NDRS Newsletter 18 June 2021
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 shares the development of a new methods paper by NCARDRS and the release of further statistics as part of the Get Data Out programme. Also, trusts can now receive our new digitally accessible version of the Cancer Registration leaflet to help inform more patients about how and why their data is collected.

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.

It 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.

Please share this newsletter with networks and colleagues
Others can sign up to our newsletter here.
Updates from NDRS
New look for the newsletter!
We are bringing you a new look to our newsletter this month which we will soon be rolling out across other areas of NDRS work. These changes support our aim of making our resources and content more accessible and making it easier for people to identify our work. We have also added captions to every image for those using a screen reader. If you have any feedback or are having issues accessing our content please contact us at NDRSengagement@phe.gov.uk.
Data releases and publications
Digital version of the Cancer Registration patient leaflet released
NDRS have developed a digitally accessible version of the Cancer Registration patient leaflet. Over the next 3 months, we are working with a number of trusts to pilot different ways of distributing the digital leaflet to patients and to help develop guidance for all trusts.

If you work for a trust and you would like to take part in the pilot, please let us know and we will send you the digital leaflet and more information.

If you are part of an organisation and you would like to host the digital leaflet and information about Cancer Registration on your website, please also contact us by sending an email to NDRSengagement@phe.gov.uk.
The NDRS Cancer Registration patient leaflet
Further statistics released as part of the Get Data Out programme
The Get Data Out programme has released new detailed statistics for 2013 to 2018 incidence, 2013 to 2017 routes to diagnosis and 2013 to 2018 treatment, for all 13 of the current Get Data Out cancer sites. These sites are:

  • Bladder, Urethra, Renal Pelvis and Ureter
  • Bone cancer
  • Brain, meningeal and other primary CNS tumours
  • Head and neck
  • Kaposi sarcoma (incidence only)
  • Kidney
  • Oesophageal and Stomach
  • Ovary, fallopian tube and primary peritoneal carcinomas
  • Pancreas
  • Prostate
  • Sarcoma
  • Soft tissue and peripheral nerve cancer
  • Testicular tumours including post-pubertal teratomas

The data is available in an open format for anyone to access and use. You can find the data on the Get Data Out website here.
An icon of data
Paper published on invasive breast cancer and breast cancer mortality after ductal carcinoma in situ (DCIS)
A team at the University of Oxford used high quality NDRS data for their research on invasive breast cancer and breast cancer mortality after screen-detected ductal carcinoma in situ (DCIS). They have recently produced a paper in collaboration with NCRAS, which was published in the British Medical Journal (BMJ). The paper shows the long-term risk of invasive disease after a diagnosis of DCIS, and how this risk varies by different patient, tumour and treatment factors. The team were awarded the Research Excellence Award by the Office for National Statistics (ONS), recognising their high quality and innovative research.
An icon of a breast
Blog published by Sarcoma UK
This month, national bone and soft tissue cancer charity Sarcoma UK published a blog on the sarcoma partnership between University College London (UCL) and Public Health England (PHE). The partnership, which is funded by Sarcoma UK, uses high quality NDRS data to establish a full picture of sarcoma care in England. In the blog, Sarcoma UK catches up with NCRAS to find out how this data can be used to transform patient care.
Sarcoma UK's logo
Emergency presentations of cancer: data up to December 2020 released
NCRAS released the emergency presentations of cancer: data up to December 2020 earlier this month. This indicator estimates the proportion of all malignant cancers where patients first presented as an emergency. This is presented for Clinical Commissioning Groups (CCG), Cancer Alliances (CA) and by site for England. This is also the first time this work has been accompanied by an app on CancerData.
A graph showing quarterly numbers of first hospital cancer admissions for England
Report published on relapsed or refractory multiple myeloma
This month NDRS, in collaboration with Health Data Insight, published a short report in the journal eJHaem on relapsed or refractory multiple myeloma. The study provides insight into a little-studied patient population. In particular, it highlights the poor outcomes of patients in England exposed to three or more prior therapies. Overall survival and time to next treatment were found to be low, reflecting several factors including end-organ damage, patient preference and the nature of relapse.
An image showing the report title

Methods paper published showing how to identify cases of Haemophagocytic lymphohistiocytosis (HLH)
This month NCRADRS, in collaboration with the University of Nottingham and other institutions, published a methods paper that describes how to identify cases of haemophagocytic lymphohistiocytosis (HLH) in routinely collected healthcare data. One of the main challenges in rare disease registration is figuring out how to identify cases without resorting to direct reporting from clinicians. HLH is a rare, hard to diagnose and often fatal disease that is associated with some cancers and viral infections. This work, funded by Histio UK, will allow NDRS to do further analysis on what will be the largest population-based cohort of HLH ever studied.
An icon of disease registration
Further news
Get involved in the European Commission's public consultation
The European Commission are carrying out a public consultation to help shape the European Health Data Space.

This is an initiative to encourage easy and safe health data sharing amongst European countries for research purposes.

They would like input from as many people as possible, including healthcare professionals, researchers, disease registries, patients and the general public.

You can find more information and fill out the questionnaire here. The deadline is 26th July.
The European Commission logo
Thank you for reading. If you have any questions or queries please get in touch. We would welcome your feedback on this newsletter too, and if you wish to unsubscribe please follow the link below.