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MR639 - NHS Blood and Transplant - Data Validation

NHS Blood and Transplant (NHSBT) · Agency/Public Body

Expired The latest version ended on 19 November 2020. The September 2026 register still lists the agreement, but its term has passed.

Reference
DARS-NIC-147815-X5CHM
Latest version
v3.4
Term of latest version
1 April 2020 to 19 November 2020
Start date
Before 1 April 2019
Data controller
Sole Data Controller
Commercial purposes
No
Sublicensing
No
Files released to date
0

Why the data was released

Objective for processing

This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period. This is a pragmatic approach to provide an active Agreement whilst enabling NHS Blood and Transplant to complete the necessary actions to enable a subsequent application to extend the Agreement meeting all applicable data sharing standards as published in NHS Digital’s website (see: https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance).

The following provides background information on the purpose of the original study:

Mortality and Cancer data were supplied to NHS Blood and Transplant by ONS and subsequently the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "NHS Blood and Transplant - Data Validation".

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated and destruction of the data will be required.

The following information provides background information on the purpose of the original study:

NHS Blood and Transplant (NHSBT) is a special health authority of the NHS. It is responsible for providing a reliable, efficient supply of blood, organs, tissues and other services to the NHS. Within NHSBT the Organ Donation and Transplantation (ODT) Directorate is responsible for ensuring that donated organs and tissues are matched to patients who need a transplant and are used in the fairest way.

As well as the above NHSBT collects information for use in analysis to help make improvements to the transplant service, survival rates and also to help maintain the safety of the transplant service. To enable NHSBT to do this NHSBT need to have good quality information and therefore information is collected in a computer system called the UK Transplant Registry.

The UK Transplant Registry was set up more than 30 years ago to store information about organ donation and transplantation. It is a computerised system that helps NHSBT to match organs/tissues safely and carry out research to improve transplant services.

Data from NHS Digital ensures that the date and cause of death held on the UK Transplant Registry is accurate and current. This is so NHSBT can develop organ allocation schemes to save and improve patient lives and ensure the safety of the current allocation schemes.

Processing activities

Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement.

The study data, including data provided by NHS Digital under previous agreements, are currently held by NHS Blood and Transplant.

The following provides background on the processing activities undertaken prior to this Agreement:

Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement.

The study data, including data provided by NHS Digital under previous agreements, are currently held by NHS Blood and Transplant.

The following provides background on the processing activities undertaken prior to this Agreement:

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation. Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement.

The study data, including data provided by NHS Digital under previous agreements, are currently held by NHS Blood and Transplant. Under this interim extension all devices containing data will be securely locked away in a locked cabinet at the NHS Blood and Transplant storage address specified in this version of the Agreement.

Expected output

This Agreement permits the secure retention of the data only and no other processing.

No new outputs will be produced under this Data Sharing Agreement.

The following is background information only

Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement.

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation

No new outputs will be produced under this Data Sharing Agreement.

In any future application, the applicant will be required to provide details of the outputs that were produced and disseminated by the study as well as details of any future outputs planned.

Expected measurable benefits

This Agreement permits the secure retention of the data only and no other processing.

No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated.

In any future application, the applicant will be required to provide details of the benefits that will be achieved as a result of this study.

Benefits reported so far

This Agreement permits the secure retention of the data only and no other processing.

In any future application, the applicant will be required to provide details of the actual benefits that have been realised as part of this study.

Datasets on the latest version

Legal basis for provision: Other-The data was disseminated with support under the Health and Social Care Act 2001 section 60 to process the data without informed consent. This legislation is no longer active and NHS Blood and Transplant is required to confirm how future processing of the data will comply with the common law duty of confidentiality.

Datasets approved under DARS-NIC-147815-X5CHM-v3.4
DatasetType of dataSensitivity FrequencyConfidential data
MRIS - Cause of Death Report Identifiable Sensitive Ongoing Does not include the flow of confidential data
MRIS - Cohort Event Notification Report Identifiable Sensitive Ongoing Does not include the flow of confidential data
MRIS - Flagging Current Status Report Identifiable Sensitive One-Off Does not include the flow of confidential data
MRIS - Members and Postings Report Identifiable 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.

No files recorded as released under this agreement.

Version history

The register lists each renewal of this agreement as a separate row. This site has 2 versions — earlier versions existed before this site's records begin.

DARS-NIC-147815-X5CHM-v3.4 1 April 2020 to 19 November 2020
Title
MR639 - NHS Blood and Transplant - Data Validation
Commercial
No
Sublicensing
No
Datasets
4
Files released
0

Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report

What changed from DARS-NIC-147815-X5CHM-v2.3

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-147815-X5CHM-v2.3
FieldWasBecame
Start date2019-04-012020-04-01
End date2020-03-312020-11-19

Objective for processing

This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period. This is a pragmatic approach to provide an active Agreement whilst enabling NHS Blood and Transplant to complete the necessary actions to enable a subsequent application to extend the Agreement meeting all applicable data sharing standards as published in NHS Digital’s website (see: https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance). The following provides background information on the purpose of the original study: [8 paragraphs unchanged]

Processing activities

Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement. The study data, including data provided by NHS Digital under previous agreements, are currently held by NHS Blood and Transplant. The following provides background on the processing activities undertaken prior to this Agreement: Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement. The study data, including data provided by NHS Digital under previous agreements, are currently held by NHS Blood and Transplant. The following provides background on the processing activities undertaken prior to this Agreement: [2 paragraphs unchanged] The following provides background on the processing activities undertaken for the original study: Identifiable data was shared with ONS to carry out the linkage between the study data and civil registration data. Participants records were ‘flagged’ with the Office for National Statistics (ONS). ONS notified the study team at NHS Blood and Transplant of participants’ deaths (date and cause) and cancer events when they occurred. The ‘flagging for long-term follow up’ service transferred from ONS to the HSCIC in 2008. Data was last supplied in January 2018.

Expected output

This Agreement permits the secure retention of the data only and no other processing. No new outputs will be produced under this Data Sharing Agreement. The following is background information only Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement. [1 paragraph unchanged] This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted. No further outputs of the data are permitted to be created under this version of the agreement. [2 paragraphs unchanged]

Expected measurable benefits

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation This Agreement permits the secure retention of the data only and no other processing. This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted. Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required. [2 paragraphs unchanged]

Benefits reported

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation This Agreement permits the secure retention of the data only and no other processing. This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted. Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required. No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated. [1 paragraph unchanged]

DARS-NIC-147815-X5CHM-v2.3 1 April 2019 to 31 March 2020
Title
MR639 - NHS Blood and Transplant - Data Validation
Commercial
No
Sublicensing
No
Datasets
4
Files released
0

Datasets: MRIS - Cause of Death Report; MRIS - Cohort Event Notification Report; MRIS - Flagging Current Status Report; MRIS - Members and Postings Report

Objective for processing

Mortality and Cancer data were supplied to NHS Blood and Transplant by ONS and subsequently the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "NHS Blood and Transplant - Data Validation".

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated and destruction of the data will be required.

The following information provides background information on the purpose of the original study:

NHS Blood and Transplant (NHSBT) is a special health authority of the NHS. It is responsible for providing a reliable, efficient supply of blood, organs, tissues and other services to the NHS. Within NHSBT the Organ Donation and Transplantation (ODT) Directorate is responsible for ensuring that donated organs and tissues are matched to patients who need a transplant and are used in the fairest way.

As well as the above NHSBT collects information for use in analysis to help make improvements to the transplant service, survival rates and also to help maintain the safety of the transplant service. To enable NHSBT to do this NHSBT need to have good quality information and therefore information is collected in a computer system called the UK Transplant Registry.

The UK Transplant Registry was set up more than 30 years ago to store information about organ donation and transplantation. It is a computerised system that helps NHSBT to match organs/tissues safely and carry out research to improve transplant services.

Data from NHS Digital ensures that the date and cause of death held on the UK Transplant Registry is accurate and current. This is so NHSBT can develop organ allocation schemes to save and improve patient lives and ensure the safety of the current allocation schemes.

Expected output

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted. No further outputs of the data are permitted to be created under this version of the agreement.

No new outputs will be produced under this Data Sharing Agreement.

In any future application, the applicant will be required to provide details of the outputs that were produced and disseminated by the study as well as details of any future outputs planned.

Benefits reported

Mortality data was supplied to NHS Blood and Transplant by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR639 - NHS Blood and Transplant - Data Validation

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated.

In any future application, the applicant will be required to provide details of the actual benefits that have been realised as part of this study.

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, the earliest of which is July 2021.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-147815-X5CHM, “MR639 - NHS Blood and Transplant - Data Validation”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-147815-x5chm/ (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-147815-X5CHM to see the original rows.