NDRS Newsletter 16 July 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 published a new data story on the UCL-PHE Sarcoma Partnership and shares publications of the VICORI Data Resource Profile and a new report by the National Lung Cancer Audit. Also, please see the Events section for details of upcoming NDRS webinars.

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.

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Updates from NDRS
Update on NDRS transition to NHS Digital (NHSD)
On 30th June the Public Health Reform Programme launched the consultation on the process of moving employees from PHE and NHS Test & Trace (T&T) to new/different organisations; these organisations being the UK Health Security Agency (UKHSA), Office for Health Promotion (Department for Health and Social Care), NHS England/Improvement and NHS Digital.

Work is well underway to support the transition of NDRS to NHSD for the 1st October with colleagues on both sides working closely to understand the complexities and joint working solutions to deliver NDRS to NHSD as smoothly as possible. We will bring you further information as work progresses.
Update on release date of 2019 cancer registration data
Further to the update in February this year, we can confirm that the full cancer registration data for 2019, including genomics and molecular data, will be released in mid-October 2021 following the publication of National Statistics.

As NDRS is transitioning to NHS Digital from 1st October 2021, the data will be made available via NHS Digital. Further information about data access processes will be confirmed shortly.

Restrictions as a result of the pandemic impacting upon remote access mean that there are known gaps in the staging data that may impact some analyses. We will be able to advise applicants to understand how this may impact your work on a case by case basis. The National Statistics will include a high level of stage indication.

Any questions, please contact NCRASenquiries@phe.gov.uk.
Data releases and publications
Data story published on the Sarcoma Partnership between University College London (UCL) and PHE
To mark the start of Sarcoma Awareness month this July, NDRS has published a data story on the UCL-PHE Sarcoma Partnership funded by the charity Sarcoma UK. Data stories explain how NDRS uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies. This 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 UCL-PHE Sarcoma Partnership uses patient data to better understand and improve sarcoma care in England. They found that many people with sarcomas were not diagnosed, treated or receiving care within specialist sarcoma centres, which had a significant impact on their experience of care and outcome.

The data story highlighted the need for high quality data from a whole population to underpin research. 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 Sarcoma UK logo
Virtual Cardio-Oncology Research Initiative (VICORI) Data Resource Profile published
This month VICORI, working in partnership with NCRAS, published a Data Resource Profile in the International Journal of Epidemiology. The Data Resource Profile describes the data that VICORI uses to investigate the interplay between cardiovascular disease and cancer. To do this, they link high quality cancer registration data, collected by NCRAS, to cardiac disease audits held by the National Institute of Cardiovascular Outcome Research (NICOR).
The VICORI logo

New Systemic Anti-Cancer Therapy (SACT) data quality report published
NDRS recently published a new SACT data quality report on CancerStats2 (requires N3/HSCN secure network connection). This report highlights a range of known data quality issues within SACT-submitting trusts, including missing drug details, incorrect height and weight entries, irregular activity patterns and recordings of zero doses. We hope the report will be a useful tool for NHS trusts to identify gaps or errors in their SACT dataset submissions and provide insight on how their data can be improved.

A new version of the SACT COVID-19 dashboard was also published at the end of June which includes a breakdown of treatment activity by stage.
An icon of a drug
Lung Cancer Clinical Outcomes Publication (LCCOP) report released
The National Lung Cancer Audit (NLCA) have published the full Lung Cancer Clinical Outcomes Publication (LCCOP) report, following the publication of the data tables in May 2021. NDRS are pleased to be the data collection partner for the NLCA. The report offers a more detailed picture and provides recommendations based on the data from the 27 surgical units in England that performed thoracic surgery between 1st January and 31st December 2018. This year the data reported the highest number of lung cancer operations and the highest survival rate since the inception of the LCCOP audit. The data highlight a continuing increase in minimally invasive surgery.
The first page of the Lung Cancer Clinical Outcomes Publication
Paper published on prevention of neural tube defects in Europe
This month, NCARDRS co-authored a paper titled 'Prevention of Neural Tube Defects in Europe: A Public Health Failure', which was published in the journal frontiers in Pediatrics. The study suggests that failure to implement mandatory folic acid fortification in Europe has caused, and continues to cause, neural tube defects to occur in almost 1,000 pregnancies every year.
An icon of a foetus
Upcoming NDRS Webinars
We are hosting a series of lunchtime webinars throughout September and October 2021.

Please click on each link below for more information and to register for free:

Thursday 2nd September, 12 to 1pm

Thursday 9th September, 12 to 1pm

Thursday 16th September, 12 to 1pm

Thursday 23rd September, 12 to 1pm

Thursday 7th October, 12 to 1pm

Thursday 14th October, 12 to 1pm
Data Analysis and Research Manager at Cancer Research UK (CRUK)
CRUK are inviting applications for a Data Analysis and Research Manager.

The post holder will manage a small team of analysts delivering analysis and interpretation around the early diagnosis and treatment of cancer. They will also maintain and enhance links between CRUK and NCRAS to improve ways of working and access to cancer data. Candidates must have significant knowledge or experience of working in an analytical or statistical environment and experience of project management.

This is a 12-month post for maternity cover, and the closing date for applicants is Sunday 18th July.
The Cancer Research UK logo
Analyst Manager at Cancer Research UK (CRUK)
CRUK are inviting applications for an Analyst Manager.

The post holder will manage a pool of analysts to deliver projects across a range of CRUK priority areas. They will also prioritise projects in collaboration with subject-specific managers, taking into account business need, analysts' professional development, and the need to share skills across the team.

This is a permanent, full-time post. The job advertisement will be closed once CRUK have a strong pool of applicants, so please submit your application as soon as possible.
The Cancer Research UK logo
Senior Cancer Data and Research Analysis Manager at Cancer Research UK (CRUK)
CRUK are inviting applications for a Senior Cancer Data and Research Analysis Manager.

The post holder will provide leadership and strategic direction on data, analysis and intelligence related to Early Diagnosis and Treatment, identifying key areas for new evidence generation. They will also manage the effective delivery of high quality UK wide analysis and interpretation of statistical information and deliver projects through their team members.

This is a 12-month post for maternity cover. The job advertisement will be closed once CRUK have a strong pool of applicants, so please submit your application as soon as possible.
The Cancer Research UK logo
Further news
Launch of the Public Information Forum's (PIF) new public-facing website
This month, PIF launched their new public-facing website. This website will help patients and the general public begin to recognise and look for the PIF Tick quality mark for health information. NDRS has successfully achieved the PIF Tick quality mark.
The Patient Information Forum logo
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