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National Disease Registration Service: NHS Digital Transparency Notice

How and why NHS Digital operates the National Disease Registration Service. 

About the National Disease Registration Service

On 1 October 2021, as part of the government’s strategy to transform the public health system in England, responsibility for the management of the National Disease Registration Service transferred from Public Health England (PHE) to NHS Digital. NHS Digital is now therefore the controller for the data held by the National Disease Registration Service (NDRS).

The information NDRS collects shows how many people in England have cancer, a rare disease or congenital anomaly. The data also shows how well treatments are working, which means it can be used to improve patient care across the country.

More information about NDRS can be found at www.ndrs.nhs.uk,

The NDRS is made up of two disease registers called the:

  • National Cancer Registration and Analysis Service (NCRAS) and the,
  • National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

National Cancer Registration and Analysis Service (NCRAS)

Your data, or that of your child, is collected by the NCRAS if you or your child:

  • have been diagnosed or treated for cancer in England
  • are suspected of having cancer
  • have a high genetic risk of cancer
  • have a condition which may lead to cancer

Data is collected by the NCRAS from NHS clinical teams in England whenever you or your child are seen or treated for cancer.

Find more information about the NCRAS.  


National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

Your data, or that of your child, is collected by the NCARDRS from NHS clinical teams in England if you or your child:

  • have been diagnosed with, or are at risk of a having a congenital anomaly - a congenital anomaly may be detected in pregnancy, or at birth, or may only become obvious as a baby grows older
  • have a rare disease, or are at risk of having a rare disease
  • you have a family member with a rare disease

Find more information about the NCARDS.


Why does the National Disease Registration Service collect data?

he NDRS collects, analyses, publishes and shares data on cancer, rare diseases and congenital anomalies to help the NHS, researchers and others, including industry partners and charities to:

  • Understand these diseases – for example, data helps us understand how many people have cancer, congenital anomalies and rare diseases and who is most at risk of developing these diseases.
  • Improve diagnosis – for example, data helps us to explore how and where people are diagnosed. We also use data to monitor and improve NHS screening programmes.
  • Plan NHS services – for example, data helps us to discover how many people have different types of cancer and rare diseases. We use this information to improve how patients are treated after diagnosis.
  • Improve treatment – for example, data helps us to understand how different treatments affect patient outcomes and how treatments vary between hospitals.
  • Evaluate policy – for example, data helps us to compare survival rates and outcomes with other countries and monitor the impact of efforts to diagnose diseases earlier and of different treatments .
  • Improve genetic counselling –  for example, data helps us to discover new gene mutations that cause cancer and rare diseases.  This information is used by the NHS to provide accurate genetic counselling and give extra care to those at risk.
  • Carry out research – for example, we partner with charities, academics and the NHS to carry out research in cancer, rare diseases and congenital anomalies. This helps us learn more about these diseases and informs clinical practice and treatments. We also share information with other organisations so they can carry out research. Any data we share is subject to robust rules relating to privacy, security and confidentiality. We explain more about this below, under Who we share data with.

What data we collect

We start collecting data as soon as you, or your child, are being investigated for a possible cancer, a rare disease or a congenital anomaly. We then follow your treatment for the rest of your life. We do this because we need to see if the disease comes back and understand the effects of treatment you receive, some of which may only become apparent years later.

It is important we hold data for at least the lifetime of a patient so that we spot long term trends in the number of people diagnosed with these diseases, how well we are treating them, and to carry out research to improve prevention, diagnosis and care. In addition, some forms of cancer and rare diseases can be inherited. For those families with this genetic risk, long term monitoring is important.

National Cancer Registration and Analysis Service (NCRAS)

If you or your child have been diagnosed with cancer, or are suspected of having cancer or are at risk of developing cancer, the NCRAS collects the following data from NHS clinical teams to create a cancer registration record:

  • Name, address and postcode
  • sex and ethnic background
  • Date of birth/age
  • NHS number / hospital number / specimen number
  • BMI, height and weight and your smoking and alcohol habits
  • Sexual orientation
  • Genetic data

We also collect information about your cancer diagnosis, your treatment and how well it is working. We collect this data from across the NHS, including from:

  • Pathology laboratories
  • Cancer services and oncology systems
  • Hospital patient administration systems
  • Imaging reports, for example the written results of x-rays

Some of the data held in cancer registration records already held by NHS Digital, including:

  • primary care prescriptions data
  • mortality data
  • hospital attendance data

Learn more about what the NCRAS collects and from which organisations.

National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

If you, your unborn baby or child have a suspected or confirmed rare disease or congenital anomaly, the NCARDRS collects the following data from NHS clinical teams to create a registration record:

  • Name, address and postcode
  • Sex and ethnic background
  • Date of birth/age
  • NHS number/hospital number
  • Height/weight and BMI
  • Physical health and genetic data

Data is also collected about family members where necessary. We collect this data from across the NHS, including from:

  • screening and testing laboratories
  • maternity care services
  • neo natal paediatric care
  • tertiary care services
  • child health records
  • routine radiology records

Some of the data held in NCARDRS registration records is already held by NHS Digital, including:

  • hospital attendance data
  • births data
  • primary care prescriptions data
  • mortality data

We also collect data from:

  • rare disease research studies (where patients have given their consent to the data sharing)
  • patient self-reporting (either directly or through patient registers, where consent allows)
  • the British Pregnancy Advice Service (BPAS) - data on terminations of pregnancy due to a fetal anomaly only
  • the UK Health Security Agency to help respond to health emergencies such as Zika virus or COVID-19, such as vaccine and testing data

Learn more about what the NCARDRS collects and from which organisations


How the National Disease Registration Service uses data

Quality checking

The data we collect is registered, checked and quality assured by skilled registration officers. If necessary, they will check with the hospital, laboratory or screening service who sent us the data to make sure it is correct and complete.

Analysis and linkage

We analyse and link the data we collect to other patient data NHS Digital already holds, such as:

  • hospital attendance data
  • births data
  • primary care prescriptions data
  • mortality data

By linking data held by the NCRAS to that collected by the National Cancer Diagnosis Audit (managed by Cancer Research UK), we can audit the referral of cancer patients for investigation and help improve early diagnosis. By linking to data from the National Institute for Cardiovascular Outcome Research (NICOR), researchers can study the links between cancer and cardiovascular diseases.

We also link rare disease and congenital anomaly data to:

  • New born Hearing Screening data, to understand more about congenital hypothyroidism (CHT) and the effectiveness of the NHS new born screening programme
  • High Cost Medicines data, to identify patients who have received specific high cost medicines and see how well these have worked 

Publishing statistics

We will use the data to publish national statistics and data outputs that contain only anonymous data which cannot be used to identify individuals. We never publish any data that could identify you.

You can see the data we publish in the NCRAS publications library, for publications using cancer data, and in the NCARDRS congenital anomaly annual data statistics.


Who we share data with

We treat the data we hold with great care. All data which is shared by NHS Digital is subject to robust rules relating to privacy, security and confidentiality and only the minimum amount of data necessary to achieve the relevant health and social care purpose will ever be shared.

Wherever possible, de-personalised data or anonymous data is used and shared to protect patient confidentiality. We also apply the National Data Guardian’s Caldicott Principles to ensure we only provide the minimum amount of data necessary for the purpose for which it is to be used. In some cases, only personally identifiable data can be shared to achieve the purpose, but this is always done in accordance with the law and subject to safeguards to ensure that the data is kept safe and secure.

All requests by other organisations to have access to data held by the NDRS are currently assessed on a case-by-case basis by the UK Health Security Agency’s Office for Data Release (ODR), who act on behalf of NHS Digital to manage those requests. The ODR previously carried out this role for Public Health England before the NDRS was transferred to NHS Digital on 1 October 2021

The ODR makes sure that organisations requesting access to the NDRS data:

  • will only use it for a health and social care purpose, and for cancer data, they will only use it for a medical purpose as defined by Regulation 2 of the Health Service (Control of Patient Information) Regulations 2002 (COPI)
  • cannot achieve their aim unless they can use data which could identify you (directly or indirectly)
  • can only access the the minimum amount of data needed to achieve the purpose
  • access de-identified data after appropriate techniques have been applied to remove and prevent the disclosure of identifying information
  • have an appropriate legal basis to request the data and have obtained all necessary legal and ethical approvals
  • have appropriate safeguards in place to ensure that the data will be processed safely and securely

Data which would enable you to be directly or indirectly identified is only shared with:

  • clinicians and the healthcare team providing you with care, such as your hospital or GP
  • organisations who can provide evidence you have given them your explicit consent to the sharing of your data with them
  • organisations who have been granted specific legal approval from the Health Research Authority’s Confidentiality Advisory Group to use confidential patient information without your consent and who also have ethical approval to do so, or
  • organisations with whom we have a legal obligation to share confidential patient information  without consent - for example where there is a Court Order, or where this is necessary for public health purposes under Regulation 3 of COPI, including under the COPI Notices issued by the Secretary of State for Health and Social Care in relation to COVID-19

There are a number of organisations the NDRS shares data with. These include: 

  • your clinician/healthcare team: to provide you with care and treatment
  • NHS England and NHS Improvement: to help measure the impact of screening programmes
  • NHS England and NHS Improvement and The National Institute for Health and Care Excellence (NICE): to provide an evaluation of the drugs which have been added to the Cancer Drugs Fund which supports a final report published by NICE
  • the Office for National Statistics: to produce national statistics about cancer and rare diseases
  • NHS clinical commissioning groups (CCGs): to help plan and improve NHS healthcare services
  • European Surveillance of Congenital Anomalies (EUROCAT): to bring together data on congenital anomalies collected by other population based registries in Europe so that expertise can be shared
  • research organisations, including universities, charities, industry partners and clinical research organisations that run clinical trials: to carry out research 

Details about the data we have shared from the NDRS with other organisations, except for anonymous data, is published in the ODR Data Release Register for releases made before the 1 October 2021. From the 1 October 2021 all data shared from the NDRS will be published on the NHS Digital Data Release Register. This includes details of each organisation ODR has released data to, alongside the type of data released, the legal basis for release and the purpose for which the data was provided.


Opting-out

National Disease Registration Service Opt-out

If you do not want your data to be used by the NDRS, you can opt out and your data will be deleted from the relevant register. You can also opt-out for your child if they are under the age of 13 or you can show they lack competency to decide for themselves.

National Data Opt-out

This applies to identifiable patient data about your health which is called confidential patient information. If you do not want your confidential patient information to be shared by the NDRS for purposes except your own care you can register a National Data Opt-out

You can find out more about and register a National Data Opt-out or change your choice on nhs.uk/your-nhs-data-matters.


How long we keep data for

The NDRS will keep patient data for as long as it is necessary for the purposes outlined above in accordance with the Records Management Code of Practice 2021 and our Records Management Policy.

Other organisations we share your personal data with must only keep it for as long as is necessary and as set out in their Data Sharing Agreement. Information about this will be provided in their privacy notices on their websites.


Where we store data

The NDRS only stores and processes data within the United Kingdom (UK).


NDRS and the law

The NDRS has legal permission to collect patient data to use it to protect the health of the population. Previously this permission was granted to Public Health England under section 251 of the National Health Services Act 2006.

From 1 October 2021, permission is now provided to NHS Digital under legal instructions known as Directions, from the Secretary of State for Health and Social Care, under section 254 of the Health and Social Care Act 2012 (2012 Act). The Directions are called the National Disease Registries Directions 2021. They instruct NHS Digital to collect and use confidential patient information to operate the NDRS.   

The NDRS has powers to publish anonymous statistical data under section 260 of the 2012 Act and to share data under section 261 of the 2012 Act. It also has powers to share data, subject to security and privacy safeguards outlined above, under other laws, for example under Regulations 2, 3 and 5 of COPI.


Your rights over your patient data

You can read more about the health and care information collected by NHS Digital, and your choices and rights in


Our Data Protection Officer

Our Data Protection Officer is Kevin Willis who can be contacted at enquiries@nhsdigital.nhs.uk.


Changes to this notice

We may make changes to this Transparency Notice. If we do, the 'last edited' date on this page will also change. Any changes to this notice will apply immediately from the date of any change.

Last edited: 1 December 2021 8:44 am