Get Data Out
We are delighted to announce that we are working, alongside neuroendocrine cancer expert clinicians, with the National Disease Registration Service (NDRS) Get Data Out programme team, to add neuroendocrine cancers to the list of cancers the NDRS publishes data on.
This is a milestone achievement and a huge step forward towards fulfilling the vision, mission and priorities of Neuroendocrine Cancer UK and builds on the foundation of work that led us to the first ever population-based epidemiological study of neuroendocrine cancers diagnosed in the UK: Genus et al 2019 . Closely followed by the White et al 2022 study – work that identified the 371% increase in incidence of neuroendocrine cancers over the last 3 decades.
We are hugely grateful to our community for their support for us and the research team, led by Professor John Ramage, who undertook this work.
Working with the NDRS will allow us free access to data, rather than having to seek and source funding to obtain it. This is essential in enabling us, alongside all stakeholders, to continue our work in the co-development and support of expert, timely, effective healthcare services that recognise, diagnose, treat, care for – and ultimately cure – people diagnosed and affected by neuroendocrine cancer.
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The National Disease Registration Service (NDRS) is part of NHS (England) and includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).
NDRS utilises and analyses data to improve patient experiences, outcomes and save lives.
As an NHS organisation, they collect patient data on cancer, congenital anomalies and rare diseases, and provides expert, timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England.
- In Wales: a similar organisation, the National Data Resource (NDR) is hosted by Digital Health and Care Wales and funded by Welsh Government
- In Scotland: Public Health Scotland host disease and health condition registration: including a Cancer Registry Service & Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS)
- In Northern Ireland: the Department of Health Information & analysis directorate (IAD) provides statistical information relating to many aspects of health and social care services in Northern Ireland.
What is the Get Data Out Programme
The Get Data Out (GDO) programme publishes in-depth, anonymous data about cancer to support research. Their experienced team of analysts use codes to search patient data held within the cancer registry. The team works with clinicians and charities to make sure that they release information that it is useful and clinically relevant, ultimately benefiting patients and researchers alike.
The information is Open Access (publicly available) and is updated yearly for the cancer groups covered.
All the data is anonymised, and statistics are published on groups of cancer patients rather than individuals, so that you cannot identify a patient from the data.
“Although you cannot directly identify a patient from the data that is published, it gives a complete breakdown of many things that clinicians, researchers, charities and patient organisations need to know to improve diagnostic routes, treatment and patient support.”
https://digital.nhs.uk/ndrs/data/data-stories/get-data-out
The Get Data Out programme publishes the most recent information on:
- Incidence (how many people get a certain type of cancer)
- Routes to diagnosis (how people have used the healthcare system before their cancer
diagnosis)
- Treatments (the type of medical care given)
- Survival (how many people are still alive after an amount of time)
The information from this work will be made available on the Get Data Out page of the NDRS website.