PREMO CNS; The PREsentation, Management and Outcomes of patients with CNS disease secondary to Breast Cancer in England (ODR2021_030)
University of Liverpool · Academic
In term In term in the September 2026 edition: the latest version runs to 13 June 2027.
- Reference
- DARS-NIC-687052-V2Q0M
- Current version
- v3.3
- Term of current version
- 14 June 2026 to 13 June 2027
- Start date
- Before 14 June 2024
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 9
Why the data was released
Objective for processing
University of Liverpool (UoL) requires access to NHS England data for the purpose of the following project:
PREMO CNS: PREsentation, Management, and Outcomes of patients with CNS (Central Nervous System) disease secondary to breast cancer in England.
The following is a summary of the aims of the audit provided by UoL:
• Primary objective: To audit the overall survival from initial diagnosis of CNS involvement secondary to breast cancer in English centres.
• Secondary objectives
- To audit the number of cases of metastatic breast cancer (MBC) involving the CNS presenting in English centres per year.
- To audit the current practice in English centres regarding the diagnosis and management of CNS disease secondary to breast cancer in relation to national and international guidelines.
- To audit the outcomes of patients treated for CNS involvement secondary to breast cancer in English centres
The following NHS England Data will be accessed:
• National Disease registration Service (NDRS) Cancer Registrations – necessary to outline relevant patient, cancer, geographical characteristics prior to in-depth statistical analysis, to obtain a breakdown with respect to sex, ethnicity, age at diagnosis, stage of cancer at diagnosis, receptor status, comorbidity, and survival/outcome.
• NDRS Systemic Anti-Cancer Therapy Dataset (SACT) – necessary to ascertain details on the SACT offered to patients both historically and in current clinical practice to outline how practice has evolved over time and illustrate changes in patient outcomes.
• NDRS National Radiotherapy Dataset (RTDS) - necessary to illustrate historical and current practice within England and analyse patient outcomes.
• NDRS Linked Hospital Episode Statistics (HES) Accident & Emergency (A&E) – necessary as breast cancer patients with CNS disease are commonly presented to A&E. This could be a marker of CNS disease or a sign of clinical progression, and the number of A&E presentations could illustrate the impact on healthcare services.
• NDRS Linked HES Admitted Patient Care (APC) – necessary to ascertain number and duration of inpatient stay as breast cancer patients with CNS disease are often admitted to an inpatient ward after presentation to A&E. This could be a marker of progression with the CNS, provides detail on key time points where patients have changes to their oncological treatment, and could illustrate the impact on healthcare services.
• NDRS Linked HES Outpatient – necessary to assess when patients were reviewed by their oncology team as practices may vary nationally.
• NDRS Linked Diagnostic Imaging Data Set (DIDS) – necessary to ascertain differences in patient care across the country as the use and requirement of diagnostic imaging is likely to vary across England. This could also infer certain complications that a patient was experiencing.
• NDRS Cancer Pathway- necessary to derive data on initial diagnosis, treatment, progression to CNS disease (and treatment) with outcomes helping to aid the service evaluations and clinical audit.
Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out
The Level of the Data will be
• Pseudonymised
The Data will be minimised as follows:
• Limited to a study cohort identified by NHS England of patients aged 16 years old and over at the time of breast cancer diagnosis.
• Limited to conditions relevant to the study identified by specific ICD or OPCS diagnosis codes.
• Limited to the geographic area of England.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) – processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) – processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care. There are benefit to the wider public/society as the audit aims to show what are the outcomes and care of patients with CNS disease in England, and how outcomes have changed over time. These are of direct importance to society given the data will either provide reassurance or raise issues that would need to be looked into in regards to the care of patients with CNS disease secondary to breast cancer.
The funding comes from multiple sources. Current funders include:
• GILEAD – Funding was in place until 31/03/2024
• Daiichi-Sankyo – Funding was in place until 28/02/2025
The funders will have no ability to suppress or otherwise limit the publication of findings.
Data will be accessed by:
• Substantive employees and students affiliated with UoL. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to UoL’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of UoL. UoL would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
Processing activities
No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).
NHS England will provide the relevant records from the above NDRS datasets to UoL. The Data will
• contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.
The Data will not be transferred to any other location.
The Data will be stored on servers at UoL.
The Data will be accessed by authorised personnel via remote access.
The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.
For remote access:
• Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
• Access controls granting users the minimum level of access required are in place;
• Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
• Multifactor authentication (MFA) is required for remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
• All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.
The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).
Remote processing will be from secure locations within England/Wales. The Data will not leave England/Wales at any time.
Data will be accessed by students affiliated with UoL. Aside from these individuals, access is restricted to employees or agents of UoL who have authorisation from the Principal Investigator.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
The data will not be linked with any other data.
There will be no requirement and no attempt to re-identify individuals when using the data.
Analysts from UoL will process/analyse the Data for the purposes described above.
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals (such as Lancet Oncology)
• Presentations at national and international conferences (such as United Kingdom Breast Cancer Group, American Association of Clinical Oncology, and European Society of Medical Oncology)
All outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Public reports
• Press/media engagement
• Presentations to patient groups (such as METUPUK and Breast Mates Cancer Support Group)
• Direct engagement with the Breast Cancer Now charity
The production and dissemination of the outputs is ongoing. Initial presentations were expected to take place in 2024.
Expected measurable benefits
The findings of this project are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment, and experience of health care users relevant to the subject matter of the study.
The use of the data could:
• help the system to better understand the health and care needs of populations.
• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of regional and national trends in health and social care needs.
• inform planning health services and programmes, for example to improve equity of access, experience, and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).
It is hoped that through publication of findings in appropriate media, the findings of this audit will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.
Benefits reported so far
The data received has been analysed and the project team have created summary tables of the key clinic-pathological features of the patients such as age, sex, ethnicity, type of breast cancer, and site of the initial breast cancer based on ICD10 code.
The data is demonstrating that overall that women with triple negative breast cancer have worse outcomes, and patients with HER2 positive breast cancer have better outcomes with brain metastases. There is also an improvement in overall survival over time for all patients as well as based on the subtype of breast cancer, namely triple negative, HER2-positive, and ER-positive.
Further analysis is currently being undertaken on the treatments the patients have received and the possible benefit of these, as well as how outcomes may vary by where the patient was treated.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| NDRS Cancer Pathway | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Cancer Registrations | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked DIDs | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked HES AE | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked HES APC | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked HES Outpatient | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS National Radiotherapy Dataset (RTDS) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Systemic Anti-Cancer Therapy Dataset (SACT) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Does not include the flow of confidential data |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to any of the 9 files released under this agreement, across every version. About opt-outs
No files recorded as released under the current version. 9 were released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions — earlier versions exist, but none has been listed in an edition this site holds.
DARS-NIC-687052-V2Q0M-v3.3 14 June 2026 to 13 June 2027
- Title
- PREMO CNS; The PREsentation, Management and Outcomes of patients with CNS disease secondary to Breast Cancer in England (ODR2021_030)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 8
- Files released
- 0
Datasets: NDRS Cancer Pathway; NDRS Cancer Registrations; NDRS Linked DIDs; NDRS Linked HES AE; NDRS Linked HES APC; NDRS Linked HES Outpatient; NDRS National Radiotherapy Dataset (RTDS); NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
What changed from DARS-NIC-687052-V2Q0M-v2.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2026-06-14 | |
| End date | 2027-06-13 |
Objective for processing
[17 paragraphs unchanged]
Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out
[13 paragraphs unchanged]
• Daiichi-Sankyo – Funding
is
was
in place until 28/02/2025
[3 paragraphs unchanged]
Expected output
[9 paragraphs unchanged]
The production and dissemination of the outputs is ongoing. Initial presentations
are
were
expected to take place in 2024.
Unchanged: Processing activities, Expected measurable benefits, Benefits reported.
DARS-NIC-687052-V2Q0M-v2.2 1 April 2025 to 13 June 2026
- Title
- PREMO CNS; The PREsentation, Management and Outcomes of patients with CNS disease secondary to Breast Cancer in England (ODR2021_030)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 8
- Files released
- 9
Datasets: NDRS Cancer Pathway; NDRS Cancer Registrations; NDRS Linked DIDs; NDRS Linked HES AE; NDRS Linked HES APC; NDRS Linked HES Outpatient; NDRS National Radiotherapy Dataset (RTDS); NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
What changed from DARS-NIC-687052-V2Q0M-v1.4
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-04-01 |
Datasets: + NDRS Cancer Pathway
Objective for processing
[16 paragraphs unchanged] • NDRS Cancer Pathway- necessary to derive data on initial diagnosis, treatment, progression to CNS disease (and treatment) with outcomes helping to aid the service evaluations and clinical audit. [17 paragraphs unchanged]
Unchanged: Processing activities, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
University of Liverpool (UoL) requires access to NHS England data for the purpose of the following project:
PREMO CNS: PREsentation, Management, and Outcomes of patients with CNS (Central Nervous System) disease secondary to breast cancer in England.
The following is a summary of the aims of the audit provided by UoL:
• Primary objective: To audit the overall survival from initial diagnosis of CNS involvement secondary to breast cancer in English centres.
• Secondary objectives
- To audit the number of cases of metastatic breast cancer (MBC) involving the CNS presenting in English centres per year.
- To audit the current practice in English centres regarding the diagnosis and management of CNS disease secondary to breast cancer in relation to national and international guidelines.
- To audit the outcomes of patients treated for CNS involvement secondary to breast cancer in English centres
The following NHS England Data will be accessed:
• National Disease registration Service (NDRS) Cancer Registrations – necessary to outline relevant patient, cancer, geographical characteristics prior to in-depth statistical analysis, to obtain a breakdown with respect to sex, ethnicity, age at diagnosis, stage of cancer at diagnosis, receptor status, comorbidity, and survival/outcome.
• NDRS Systemic Anti-Cancer Therapy Dataset (SACT) – necessary to ascertain details on the SACT offered to patients both historically and in current clinical practice to outline how practice has evolved over time and illustrate changes in patient outcomes.
• NDRS National Radiotherapy Dataset (RTDS) - necessary to illustrate historical and current practice within England and analyse patient outcomes.
• NDRS Linked Hospital Episode Statistics (HES) Accident & Emergency (A&E) – necessary as breast cancer patients with CNS disease are commonly presented to A&E. This could be a marker of CNS disease or a sign of clinical progression, and the number of A&E presentations could illustrate the impact on healthcare services.
• NDRS Linked HES Admitted Patient Care (APC) – necessary to ascertain number and duration of inpatient stay as breast cancer patients with CNS disease are often admitted to an inpatient ward after presentation to A&E. This could be a marker of progression with the CNS, provides detail on key time points where patients have changes to their oncological treatment, and could illustrate the impact on healthcare services.
• NDRS Linked HES Outpatient – necessary to assess when patients were reviewed by their oncology team as practices may vary nationally.
• NDRS Linked Diagnostic Imaging Data Set (DIDS) – necessary to ascertain differences in patient care across the country as the use and requirement of diagnostic imaging is likely to vary across England. This could also infer certain complications that a patient was experiencing.
• NDRS Cancer Pathway- necessary to derive data on initial diagnosis, treatment, progression to CNS disease (and treatment) with outcomes helping to aid the service evaluations and clinical audit.
The Level of the Data will be
• Pseudonymised
The Data will be minimised as follows:
• Limited to a study cohort identified by NHS England of patients aged 16 years old and over at the time of breast cancer diagnosis.
• Limited to conditions relevant to the study identified by specific ICD or OPCS diagnosis codes.
• Limited to the geographic area of England.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) – processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) – processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care. There are benefit to the wider public/society as the audit aims to show what are the outcomes and care of patients with CNS disease in England, and how outcomes have changed over time. These are of direct importance to society given the data will either provide reassurance or raise issues that would need to be looked into in regards to the care of patients with CNS disease secondary to breast cancer.
The funding comes from multiple sources. Current funders include:
• GILEAD – Funding was in place until 31/03/2024
• Daiichi-Sankyo – Funding is in place until 28/02/2025
The funders will have no ability to suppress or otherwise limit the publication of findings.
Data will be accessed by:
• Substantive employees and students affiliated with UoL. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to UoL’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of UoL. UoL would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals (such as Lancet Oncology)
• Presentations at national and international conferences (such as United Kingdom Breast Cancer Group, American Association of Clinical Oncology, and European Society of Medical Oncology)
All outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Public reports
• Press/media engagement
• Presentations to patient groups (such as METUPUK and Breast Mates Cancer Support Group)
• Direct engagement with the Breast Cancer Now charity
The production and dissemination of the outputs is ongoing. Initial presentations are expected to take place in 2024.
Benefits reported
The data received has been analysed and the project team have created summary tables of the key clinic-pathological features of the patients such as age, sex, ethnicity, type of breast cancer, and site of the initial breast cancer based on ICD10 code.
The data is demonstrating that overall that women with triple negative breast cancer have worse outcomes, and patients with HER2 positive breast cancer have better outcomes with brain metastases. There is also an improvement in overall survival over time for all patients as well as based on the subtype of breast cancer, namely triple negative, HER2-positive, and ER-positive.
Further analysis is currently being undertaken on the treatments the patients have received and the possible benefit of these, as well as how outcomes may vary by where the patient was treated.
DARS-NIC-687052-V2Q0M-v1.4 14 June 2024 to 13 June 2026
- Title
- PREMO CNS; The PREsentation, Management and Outcomes of patients with CNS disease secondary to Breast Cancer in England (ODR2021_030)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 0
Datasets: NDRS Cancer Registrations; NDRS Linked DIDs; NDRS Linked HES AE; NDRS Linked HES APC; NDRS Linked HES Outpatient; NDRS National Radiotherapy Dataset (RTDS); NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
Objective for processing
University of Liverpool (UoL) requires access to NHS England data for the purpose of the following project:
PREMO CNS: PREsentation, Management, and Outcomes of patients with CNS (Central Nervous System) disease secondary to breast cancer in England.
The following is a summary of the aims of the audit provided by UoL:
• Primary objective: To audit the overall survival from initial diagnosis of CNS involvement secondary to breast cancer in English centres.
• Secondary objectives
- To audit the number of cases of metastatic breast cancer (MBC) involving the CNS presenting in English centres per year.
- To audit the current practice in English centres regarding the diagnosis and management of CNS disease secondary to breast cancer in relation to national and international guidelines.
- To audit the outcomes of patients treated for CNS involvement secondary to breast cancer in English centres
The following NHS England Data will be accessed:
• National Disease registration Service (NDRS) Cancer Registrations – necessary to outline relevant patient, cancer, geographical characteristics prior to in-depth statistical analysis, to obtain a breakdown with respect to sex, ethnicity, age at diagnosis, stage of cancer at diagnosis, receptor status, comorbidity, and survival/outcome.
• NDRS Systemic Anti-Cancer Therapy Dataset (SACT) – necessary to ascertain details on the SACT offered to patients both historically and in current clinical practice to outline how practice has evolved over time and illustrate changes in patient outcomes.
• NDRS National Radiotherapy Dataset (RTDS) - necessary to illustrate historical and current practice within England and analyse patient outcomes.
• NDRS Linked Hospital Episode Statistics (HES) Accident & Emergency (A&E) – necessary as breast cancer patients with CNS disease are commonly presented to A&E. This could be a marker of CNS disease or a sign of clinical progression, and the number of A&E presentations could illustrate the impact on healthcare services.
• NDRS Linked HES Admitted Patient Care (APC) – necessary to ascertain number and duration of inpatient stay as breast cancer patients with CNS disease are often admitted to an inpatient ward after presentation to A&E. This could be a marker of progression with the CNS, provides detail on key time points where patients have changes to their oncological treatment, and could illustrate the impact on healthcare services.
• NDRS Linked HES Outpatient – necessary to assess when patients were reviewed by their oncology team as practices may vary nationally.
• NDRS Linked Diagnostic Imaging Data Set (DIDS) – necessary to ascertain differences in patient care across the country as the use and requirement of diagnostic imaging is likely to vary across England. This could also infer certain complications that a patient was experiencing.
The Level of the Data will be
• Pseudonymised
The Data will be minimised as follows:
• Limited to a study cohort identified by NHS England of patients aged 16 years old and over at the time of breast cancer diagnosis.
• Limited to conditions relevant to the study identified by specific ICD or OPCS diagnosis codes.
• Limited to the geographic area of England.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) – processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) – processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.
This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care. There are benefit to the wider public/society as the audit aims to show what are the outcomes and care of patients with CNS disease in England, and how outcomes have changed over time. These are of direct importance to society given the data will either provide reassurance or raise issues that would need to be looked into in regards to the care of patients with CNS disease secondary to breast cancer.
The funding comes from multiple sources. Current funders include:
• GILEAD – Funding was in place until 31/03/2024
• Daiichi-Sankyo – Funding is in place until 28/02/2025
The funders will have no ability to suppress or otherwise limit the publication of findings.
Data will be accessed by:
• Substantive employees and students affiliated with UoL. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to UoL’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of UoL. UoL would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
Expected output
The expected outputs of the processing will be:
• Submissions to peer reviewed journals (such as Lancet Oncology)
• Presentations at national and international conferences (such as United Kingdom Breast Cancer Group, American Association of Clinical Oncology, and European Society of Medical Oncology)
All outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Public reports
• Press/media engagement
• Presentations to patient groups (such as METUPUK and Breast Mates Cancer Support Group)
• Direct engagement with the Breast Cancer Now charity
The production and dissemination of the outputs is ongoing. Initial presentations are expected to take place in 2024.
Benefits reported
The data received has been analysed and the project team have created summary tables of the key clinic-pathological features of the patients such as age, sex, ethnicity, type of breast cancer, and site of the initial breast cancer based on ICD10 code.
The data is demonstrating that overall that women with triple negative breast cancer have worse outcomes, and patients with HER2 positive breast cancer have better outcomes with brain metastases. There is also an improvement in overall survival over time for all patients as well as based on the subtype of breast cancer, namely triple negative, HER2-positive, and ER-positive.
Further analysis is currently being undertaken on the treatments the patients have received and the possible benefit of these, as well as how outcomes may vary by where the patient was treated.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
-
September 2024 —
first listed. 1 version: DARS-NIC-687052-V2Q0M-v1.4
-
May 2025
1 version added: DARS-NIC-687052-V2Q0M-v2.2
-
July 2026
1 version added: DARS-NIC-687052-V2Q0M-v3.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-687052-V2Q0M, “PREMO CNS; The PREsentation, Management and Outcomes of patients with CNS disease secondary to Breast Cancer in England (ODR2021_030)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-687052-v2q0m/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-687052-V2Q0M to see the original rows.