NDRS Newsletter │16 November 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
November is Lung cancer, Pancreatic cancer and mouth cancer Awareness month
At NDRS we wanted to use this opportunity to tell you about some of our work in these areas.
 
Working with charities, clinicians and researchers, the Get Data Out (GDO) programme publishes data about small groups of patients according to clinically important factors and factors that affect treatment/outcomes. You can find out more and access the detailed statistics from the GDO programme on CancerData. CancerData is a publicly available resource.
 
The GDO programme publishes data on Pancreatic cancer on the cancer data website this is accompanied with an interactive tool which is accompanied with an excel document which has in depth stats on incidence and outcomes and pancreatic cancer. https://www.cancerdata.nhs.uk/getdataout/pancreas. 9263 pancreatic cancer diagnosis in 2019.
 
Whilst the GDO programme does not publish data specific to mouth cancer. The programme does publish data on the head and neck which features information on the oral cavity, salivary glands and tongue. https://www.cancerdata.nhs.uk/getdataout/head_and_neck.

Lastly, we feature one of our data stories about lung cancer treatment. The story shows the importance of when valuable patient data is analysed to understand how well lung cancer treatment is working. Stereotactic ablative radiotherapy (SABR) was introduced in 2013 to treat non small cell lung cancer (NSCLC) and this was the first time the treatment has been studied in depth across England. By analysing patient data NCRAS found that the risk of death was lower for patients with stage 1 NSCLC treated with SABR compared to fractionated radiotherapy.  
Update on NDRS websites
You will hopefully be aware that NDRS is developing a new website which will consolidate all the content from our existing sites into one place. This site is currently in private beta with the aim of publicly launching it in the new year. You can view it here and we would very much welcome any feedback you have. You will find a link to a feedback form in the banner at the top of the site.

As of this week, with permission from the NHSE (previously NHSX) Government Digital Standard (GDS) team, the old NDRS site (www.NDRS.nhs.uk) will become dormant which means it will still be visible, but we will no longer be updating the content.
All of the relevant information on this site has now been migrated to the private beta site and updated to align with the accessibility and publishing requirements. The other NDRS sites (www.NCIN.org.uk and www.Chemodataset.nhs.uk) remain unchanged at this time but will in due course be retired once the new website has been publicly launched. We will keep you updated on any further changes.
NDRS Stakeholder Survey
Thank you to everyone who has so responded to our stakeholder survey so far. We have received some really useful feedback and will be collating and sharing a summary in due course. We have extended the deadline to this Friday 18 November for those that would like a chance to give their views.
Data releases and publications
Detailed cancer statistics from Get Data Out: 2013-2019 treatment and survival data
The Get Data Out (GDO) programme from the National Disease Registration Service has released new detailed statistics on treatment and survival for cancer patients diagnosed between 2013 and 2019, for all 15 of the current GDO cancer sites. The data is available in an open format for anyone to access and use. You can find the data in the usual place on the GDO website.
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Publication using NCRAS data on Incidence and survival of neuroendocrine neoplasia in England
This comprehensive whole population analysis of neuroendocrine neoplasia (NEN) in England between 1995-2018 using NCRAS data is to our knowledge the largest in Europe to date. Age, sex, stage, deprivation, site and morphology were identified as statistically significant independent predictors of survival. Survival is improving over time which might be explained by stage breakdown at each site.
There is a survival advantage for females with NEN when compared with males. Identification of poorly differentiated neuroendocrine carcinomas is important due to their poor prognosis compared to neuroendocrine tumours. Rising incidence of NEN, coupled with improved survival, means that the cohort of patients living with this disease across Europe is expanding. Improved, tailored commissioning for NEN services is needed to ease the burden on national healthcare systems and chiefly to provide better care for patients living with this condition
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Haemophagocytic Lymphohistiocytosis publication
A landmark paper has been published on Haemophagocytic Lymphohistiocytosis (HLH) in HemoSphere. Not only is this the first time that results of linked National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) and National Cancer Registration and Analysis Service (NCRAS) data have been published, it’s the first rare disease incidence paper published by NDRS. HLH is associated with high mortality rates in all age groups, particularly those with underlying malignancy. The study found that the incidence of diagnosed HLH in England has quadrupled between 2003 and 2018. There were 1674 people with HLH diagnosed in England between 2003 and 2018. Substantial variation in the incidence occurred with inflammatory rheumatological diseases/ inflammatory bowel disease-associated HLH, increasing more among the younger age groups, whereas in older age groups, the largest increase was seen with haematological malignancy-associated HLH.
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