MR559 - The Norfolk Arthritis Register (NOAR)
The University of Manchester · Academic
Expired The latest version ended on 30 September 2025. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-147811-YTH88
- Latest version
- v6.2
- Term of latest version
- 30 June 2025 to 30 September 2025
- Start date
- Before 1 June 2019
- Data controller
- Joint Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Data controllers
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.
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
The data was originally supplied for the purpose of the Norfolk Arthritis Register (NOAR). NOAR is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
NOAR started in 1989 and is a long-term study of inflammatory arthritis in the community. The purpose of the Register is to study the natural history of arthritis and to identify genetic and non-genetic factors which may be related to the onset of arthritis, response to treatment, and to long-term outcome. This study is also interested in learning more about the effects which arthritis may have on other medical conditions.
Mortality data were supplied to the University of Manchester by ONS and subsequently by the NHS England (now known as NHS England) from 1998 to February 2017.
Processing activities
Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS England under this 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.
Expected measurable benefits
This Agreement permits the secure retention of the data only and no other processing.
Benefits reported so far
Not stated in the register.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(c)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| MRIS - Cause of Death Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Cohort Event Notification Report | Identifiable | Sensitive | Ongoing | Consent (Reasonable Expectation) |
| MRIS - Flagging Current Status Report | Identifiable | Sensitive | One-Off | Consent (Reasonable Expectation) |
| MRIS - Members and Postings Report | Identifiable | Sensitive | One-Off | Consent (Reasonable Expectation) |
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 5 versions — earlier versions existed before this site's records begin.
DARS-NIC-147811-YTH88-v6.2 30 June 2025 to 30 September 2025
- Title
- MR559 - The Norfolk Arthritis Register (NOAR)
- 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-147811-YTH88-v5.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-06-30 | |
| End date | 2025-09-30 |
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits.
DARS-NIC-147811-YTH88-v5.2 31 January 2025 to 30 June 2025
- Title
- MR559 - The Norfolk Arthritis Register (NOAR)
- 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-147811-YTH88-v4.5
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-01-31 | |
| End date | 2025-06-30 |
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits.
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
The data was originally supplied for the purpose of the Norfolk Arthritis Register (NOAR). NOAR is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
NOAR started in 1989 and is a long-term study of inflammatory arthritis in the community. The purpose of the Register is to study the natural history of arthritis and to identify genetic and non-genetic factors which may be related to the onset of arthritis, response to treatment, and to long-term outcome. This study is also interested in learning more about the effects which arthritis may have on other medical conditions.
Mortality data were supplied to the University of Manchester by ONS and subsequently by the NHS England (now known as NHS England) from 1998 to February 2017.
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.
DARS-NIC-147811-YTH88-v4.5 15 August 2024 to 31 January 2025
- Title
- MR559 - The Norfolk Arthritis Register (NOAR)
- 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-147811-YTH88-v3.9
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Data controller basis | Joint Data Controller | |
| Start date | 2024-08-15 | |
| End date | 2025-01-31 |
Data controllers: + UNIVERSITY OF EAST ANGLIA
Objective for processing
[4 paragraphs unchanged]
Mortality data were supplied to the University of Manchester by ONS and subsequently by the
Health and Social Care Information Centre
NHS England
(now known as NHS
Digital)
England)
from 1998 to February 2017.
Processing activities
Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS
Digital
England
under this Agreement.
Unchanged: Expected output, Expected measurable benefits.
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
The data was originally supplied for the purpose of the Norfolk Arthritis Register (NOAR). NOAR is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
NOAR started in 1989 and is a long-term study of inflammatory arthritis in the community. The purpose of the Register is to study the natural history of arthritis and to identify genetic and non-genetic factors which may be related to the onset of arthritis, response to treatment, and to long-term outcome. This study is also interested in learning more about the effects which arthritis may have on other medical conditions.
Mortality data were supplied to the University of Manchester by ONS and subsequently by the NHS England (now known as NHS England) from 1998 to February 2017.
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.
DARS-NIC-147811-YTH88-v3.9 10 October 2021 to 9 October 2022
- Title
- MR559 - The Norfolk Arthritis Register (NOAR)
- 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-147811-YTH88-v2.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2021-10-10 | |
| End date | 2022-10-09 |
Objective for processing
This Data Sharing Agreement permits the retention of the data
provided under previous iterations of this Agreement
for an interim
period but no other processing of the data is permitted.
period.
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.
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
The following information provides background information on the purpose of the original study:
The data was originally supplied for the purpose of the Norfolk Arthritis Register (NOAR). NOAR is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
The Norfolk Arthritis Register (NOAR) is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
[1 paragraph unchanged]
Mortality data were supplied to the University of Manchester by ONS and subsequently
by
the Health and Social Care Information Centre (now known as NHS Digital)
for the purpose of a research study referred
from 1998
to
The Norfolk Arthritis Register (NOAR).
February 2017.
Processing activities
[1 paragraph unchanged]
The study data, including data provided by NHS Digital under previous agreements, are currently held by the University of Manchester. Under this interim extension all portable devices containing data will be securely locked away in a locked cabinet at one of the storage addresses specified in this Agreement.
The following provides background on the processing activities undertaken for the original study:
Identifying 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 the University of Manchesher of participants’ deaths (date and cause) when they occurred. The ‘flagging for long-term follow up’ service transferred from ONS to the HSCIC in 2008. Data was last supplied in February 2017.
Expected output
This Agreement permits the secure retention of the data only and no other processing.
[1 paragraph unchanged]
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
In any future application, the applicant will be required to provide details of the expected benefits resulting from the study.
This Agreement permits the secure retention of the data only and no other processing.
Benefits reported
Stated in the previous version and removed here.
In any future application, the applicant will be required to provide details of the actual benefits achieved as a result of the study.
Objective for processing
This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period.
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
The data was originally supplied for the purpose of the Norfolk Arthritis Register (NOAR). NOAR is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
NOAR started in 1989 and is a long-term study of inflammatory arthritis in the community. The purpose of the Register is to study the natural history of arthritis and to identify genetic and non-genetic factors which may be related to the onset of arthritis, response to treatment, and to long-term outcome. This study is also interested in learning more about the effects which arthritis may have on other medical conditions.
Mortality data were supplied to the University of Manchester by ONS and subsequently by the Health and Social Care Information Centre (now known as NHS Digital) from 1998 to February 2017.
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.
DARS-NIC-147811-YTH88-v2.3 1 June 2019 to 28 February 2021
- Title
- MR559 - The Norfolk Arthritis Register (NOAR)
- 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
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:
The Norfolk Arthritis Register (NOAR) is a large community-based study investigating the cause and outcome of inflammatory polyarthritis (inflammation and swelling of the joints). The Register is funded by the Arthritis Research Campaign through a grant to its Epidemiology Unit based at the University of Manchester. NOAR is a satellite of the Epidemiology Unit and is based in the Department of Rheumatology at the Norfolk and Norwich University Hospital.
NOAR started in 1989 and is a long-term study of inflammatory arthritis in the community. The purpose of the Register is to study the natural history of arthritis and to identify genetic and non-genetic factors which may be related to the onset of arthritis, response to treatment, and to long-term outcome. This study is also interested in learning more about the effects which arthritis may have on other medical conditions.
Mortality data were supplied to the University of Manchester by ONS and subsequently the Health and Social Care Information Centre (now known as NHS Digital) for the purpose of a research study referred to The Norfolk Arthritis Register (NOAR).
Expected output
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
In any future application, the applicant will be required to provide details of the actual benefits achieved as a result of the 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.
-
July 2021 —
already listed in the earliest edition this site holds, so it may be older. 1 version: DARS-NIC-147811-YTH88-v2.3
-
November 2021
1 version added: DARS-NIC-147811-YTH88-v3.9
-
November 2024
1 version added: DARS-NIC-147811-YTH88-v4.5
-
April 2025
1 version added: DARS-NIC-147811-YTH88-v5.2
-
September 2025
1 version added: DARS-NIC-147811-YTH88-v6.2
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-147811-YTH88, “MR559 - The Norfolk Arthritis Register (NOAR)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-147811-yth88/ (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-147811-YTH88 to see the original rows.