The Norfolk Arthritis Register (NOAR) a longitudinal observational study
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-333021-B6W2C
- Latest version
- v5.2
- Term of latest version
- 30 June 2025 to 30 September 2025
- Start date
- 1 February 2017
- Data controller
- Joint Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 20
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.
Under previous versions of this Agreement, Hospital Episode Statistics Admitted Patient Care and Critical Care data were supplied to the University of Manchester covering the period from 1999 to 2017.
The HES data was provided to the University of Manchester by NHS England in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS England. NHS England matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
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(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Identifiable | Non-Sensitive | One-Off | Section 251 NHS Act 2006 |
| Hospital Episode Statistics Critical Care (HES Critical Care) | Identifiable | Non-Sensitive | One-Off | Section 251 NHS Act 2006 |
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 applied to all 20 files released under this agreement, across every version. About opt-outs
No files recorded as released under the latest version. 20 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 6 versions.
DARS-NIC-333021-B6W2C-v5.2 30 June 2025 to 30 September 2025
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
What changed from DARS-NIC-333021-B6W2C-v4.2
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-333021-B6W2C-v4.2 31 January 2025 to 30 June 2025
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
What changed from DARS-NIC-333021-B6W2C-v3.5
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.
Under previous versions of this Agreement, Hospital Episode Statistics Admitted Patient Care and Critical Care data were supplied to the University of Manchester covering the period from 1999 to 2017.
The HES data was provided to the University of Manchester by NHS England in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS England. NHS England matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
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-333021-B6W2C-v3.5 15 August 2024 to 31 January 2025
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
What changed from DARS-NIC-333021-B6W2C-v2.6
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 | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): type of data | Identifiable | |
| Hospital Episode Statistics Critical Care (HES Critical Care): legal basis | Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. | |
| Hospital Episode Statistics Critical Care (HES Critical Care): type of data | Identifiable |
Data controllers: + UNIVERSITY OF EAST ANGLIA
Objective for processing
[5 paragraphs unchanged]
The HES data was provided to the University of Manchester by NHS
Digital
England
in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS
Digital.
England.
NHS
Digital
England
matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
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.
Under previous versions of this Agreement, Hospital Episode Statistics Admitted Patient Care and Critical Care data were supplied to the University of Manchester covering the period from 1999 to 2017.
The HES data was provided to the University of Manchester by NHS England in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS England. NHS England matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
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-333021-B6W2C-v2.6 10 October 2021 to 9 October 2022
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
What changed from DARS-NIC-333021-B6W2C-v1.7
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.
This is a pragmatic approach to provide an active Agreement whilst enabling University of Manchester 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:
Data held by the University of Manchester or by the University of East Anglia must be securely stored and not otherwise processed.
Rheumatoid arthritis (RA) and its subset inflammatory arthritis (IP) are chronic auto-immune diseases with a prevalence of about 1.5% in the adult population. Patients with IP are at increased risk to develop cardiovascular diseases, lung disorders and certain types of cancer. However, limited data are available on risk factors for developing these outcomes. It is therefore important to follow patients since disease onset is over a long period of time. The Norfolk Arthritis Register (NOAR) includes patients with early IP and follows these patients over time.
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 purpose of the Norfolk Arthritis Register is to identify genetic and nongenetic factors which may be related to the onset of inflammatory arthritis, response to treatment and its long-term outcomes. The principal research objective of this substudy is to establish the frequency and risk factors for certain medical conditions known to be linked to inflammatory polyarthritis in particular coronary heart disease, stroke, certain types of cancer and infection. Data obtained from HSCIC will enable the University of Manchester to identify which patients have experienced the outcomes of interest: - co-morbidities associated with rheumatoid arthritis; cardiovascular disease, lung disorders, cancer and potentially other co-morbidities the University of Manchester plan to investigate. Based on the information the University of Manchester have already collected as part of the NOAR study they will establish whether cumulative disease activity, degree of physical activity, treatment or other disease related factors are risk factors or protective factors for the different outcomes of interest.
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.
The prevalence of RA in the UK is about 1.5% and patients with RA are at increased risk of cardiovascular comorbidities: eg unrecognized myocardial infarction (HR 2.13, 95%CI 1.13-4.03), and heart failure (HR 1.87, 95%CI 1.47-2.39). In addition, it has been estimated that over 50% of premature deaths in RA are due to cardiovascular disease.
Under previous versions of this Agreement, Hospital Episode Statistics Admitted Patient Care and Critical Care data were supplied to the University of Manchester covering the period from 1999 to 2017.
The output from this study will inform health professionals working in the field of rheumatology about the occurrence of the most common co-morbidities in patients with IP. Identification of possible (modifiable) risk factors will also enable early intervention to prevent the development of these comorbidities in the future.
The HES data was provided to the University of Manchester by NHS Digital in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS Digital. NHS Digital matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
Processing activities
[1 paragraph unchanged]
The study data, including data provided by NHS Digital under previous agreements, are currently held by University of Manchester.
The following provides background on the processing activities undertaken prior to this Agreement:
In the Norfolk Arthritis Register (NOAR) all patients have a unique ID number and after linkage with hospitalisation data all identifying data will be removed.
Data will be linked with information obtained as part of the NOAR study including patients with IP.
For linkage of HES data with clinical data obtained by NOAR the following procedures will be followed:
1) The University of Manchester will submit NHS number, patient ID, postcode, gender and DOB and their date of study entry to HES.
2) NHS Digital will return to the University of Manchester an episode level report of all admissions for these patients since 2000 or the date of NOAR study entry, depending on inclusion date. HES data will be stored in a separate password protected database to which only key personnel to the study have access.
3) As part of the NOAR study the University of Manchester collect data on dob, gender and postcode to determine socioeconomic status. This information is stored in the NOAR database. However, using the NOAR ID number the University of Manchester will link the NOAR demographic and clinical data with the HES data. This linked information will be stored on a standalone encrypted and password protected computer with limited access to researchers involved in data analysis of HES data. Before linking data between NOAR and HES, the University of Manchester will generate age and deprivation scores and remove dob and postcode from the NOAR database to be linked with HES data.
4) No individual identifiable patient data will be published. For publications the University of Manchester will aggregate data and events with small numbers (N<5 events) will not be published. All analyses are performed on groups of patients.
Only eligible researchers and the NOAR data management team working within the Centre for Musculoskeletal Research who are substantive employees of the University of Manchester, will have access to the HES data and the University of Manchester will not share HES data with other organisations.
Researchers analysing HES data linked with NOAR data are researchers working within the Centre for Musculoskeletal Research, University of Manchester.
All data are saved on secure servers and researchers are not allowed to copy HES data on external computers/laptops.
The University of Manchester will not share HES data with 3rd parties.
Expected output
[2 paragraphs unchanged]
Outputs achieved to date
A NOAR research forum took place at Norfolk and Norwich University Hospital September 2013 - presentations by NOAR consultant rheumatologist and senior research fellow; alongside other consultants and researchers.
An abstract including HES data was presented at the international EULAR conference in 2014 (respiratory morbidity and mortality in early rheumatoid arthritis, S Ramanujam, DPM Symmons, T Marshall, J Chipping, IN Bruce, SMM Verstappen). The University of Manchester are awaiting HES follow-up data to finalise the manuscript.
To date one abstract looking at the development of lung disorders in patients with inflammatory polyarthritis (IP)/rheumatoid arthritis (RA) was presented at EULAR in 2014. However, the number of patients with IP developing lung disorders was too small and the University of Manchester are currently awaiting follow-up HES data to increase the number of cases and write the manuscript on this topic.
Future outputs
Abstracts of outputs will be submitted for presentation at national (e.g. British Society for Rheumatology (BSR)) and international conferences (e.g. European League Against Rheumatism (EULAR) and American College of Rheumatology (ACR)). In general, the University of Manchester endeavour to write a manuscript of all abstracts presented at national and international conferences.
The University of Manchester plan to target a number of publications looking at the occurrence and development of co-morbidities in patients with IP based on the information provided by HES and linked with NOAR data. Manuscripts will be submitted to high impact peer-reviewed journals in the field of rheumatology (e.g. Annals of Rheumatic Diseases, Arthritis & Rheumatology) or to general medical journals (e.g. The Lancet, Annals of Internal Medicine).
Outputs will contain only aggregate level data with small numbers suppressed. Within the Arthritis Research UK Centre for Epidemiology all manuscripts containing data from the Norfolk Arthritis Register (NOAR) will be open access publications and thus freely available for everyone to access.
Once manuscripts are accepted a lay summary will be written and uploaded on the Centre for Musculoskeletal Research (CfMR) website. Funders of the University of Manchester research, Arthritis Research UK and the NIHR, will be informed about the publication and all publications will be referenced in the annual reports of these funding bodies.
After publication, clinically relevant publications may be cited on websites of charity organisations such as Arthritis Research UK and the National Rheumatoid Arthritis Society or the British Society for Rheumatology website. If the University of Manchester feel that the output is of high significance they will inform the press officer of the University of Manchester as well. It is very likely that one of these manuscripts will be submitted for REF (Research Excellence Framework - a system for assessing the quality of research in UK higher education institutions).
The University of Manchester work closely with patient organisations (Arthritis Research UK and National Rheumatoid Arthritis Society) to implement their research findings into patient management information leaflet or website blogs.
Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide.
Expected measurable benefits
[1 paragraph unchanged]
A better understanding of risk factors of comorbidities including cardiovascular diseases, lung disorders and cancer will directly impact of better intervention resulting in less morbidities and reduced likelihood of premature death, better quality of life for the patient and less direct and indirect costs for the NHS and society.
The research the University of Manchester intend to carry out, utilising HES data, has the potential to influence the National Institute for Health and Care Excellence (NICE) guidelines and other guidelines regarding clinical practice in rheumatology based on any outputs. The overall aim of the research is to improve the health care of patients with IP/RA resulting in better quality of life of these patients. For most of the studies investigating the occurrence and development of co-morbidities, utilising HES data, the University of Manchester will develop prediction models identifying possible demographic (e.g. age, gender, smoking status) and clinical predictors of these co-morbidities. Identification of these predictors will inform health care professionals on how to manage IP/RA with an aim to reduce the risk of the development of co-morbidities. In addition, if certain lifestyle factors are identified, the study will seek further collaborations with patient organisations to provide better information for patients about these risk factors. Although the University of Manchester overall aim is to improve the health care of patients with IP/RA, it may take a number of years before the impact of any changes in management can be measured.
Benefits achieved to date
To date the University of Manchester already have shown that there is still an increased risk of mortality due to rheumatoid arthritis associated co-morbidities such as cardiovascular diseases and the prevalence of obstructive lung disease is higher in the rheumatoid arthritis compared to the general population based on spirometry tests. The University of Manchester have also shown that early treatment and achieving early remission is associated with less functional disability and improved survival in patients with inflammatory polyarthritis.
Future expected benefits
The University of Manchester envisage outcomes from the proposed research will also feed into NICE guidelines and published guidelines by the British Society of Rheumatology on management of arthritis and prevention of co-morbidities.
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.
Under previous versions of this Agreement, Hospital Episode Statistics Admitted Patient Care and Critical Care data were supplied to the University of Manchester covering the period from 1999 to 2017.
The HES data was provided to the University of Manchester by NHS Digital in a pseudonymised form. The NOAR ID, date of birth, postcode, NHS number (if available) and gender of eligible patients were provided to NHS Digital. NHS Digital matched the data and then sent back the HES file with just the NOAR ID number included to enable linkage.
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-333021-B6W2C-v1.7 2 February 2020 to 28 February 2021
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
What changed from DARS-NIC-333021-B6W2C-v0.11
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-02-02 | |
| End date | 2021-02-28 | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): common law duty of confidentiality | Section 251 NHS Act 2006 | |
| Hospital Episode Statistics Critical Care (HES Critical Care): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) | |
| Hospital Episode Statistics Critical Care (HES Critical Care): common law duty of confidentiality | Section 251 NHS Act 2006 |
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 University of Manchester 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: [4 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 University of Manchester. The following provides background on the processing activities undertaken prior to this Agreement: [11 paragraphs unchanged]
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. [12 paragraphs unchanged]
Expected measurable benefits
This Agreement permits the secure retention of the data only and no other processing. [6 paragraphs unchanged]
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 University of Manchester 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:
Rheumatoid arthritis (RA) and its subset inflammatory arthritis (IP) are chronic auto-immune diseases with a prevalence of about 1.5% in the adult population. Patients with IP are at increased risk to develop cardiovascular diseases, lung disorders and certain types of cancer. However, limited data are available on risk factors for developing these outcomes. It is therefore important to follow patients since disease onset is over a long period of time. The Norfolk Arthritis Register (NOAR) includes patients with early IP and follows these patients over time.
The purpose of the Norfolk Arthritis Register is to identify genetic and nongenetic factors which may be related to the onset of inflammatory arthritis, response to treatment and its long-term outcomes. The principal research objective of this substudy is to establish the frequency and risk factors for certain medical conditions known to be linked to inflammatory polyarthritis in particular coronary heart disease, stroke, certain types of cancer and infection. Data obtained from HSCIC will enable the University of Manchester to identify which patients have experienced the outcomes of interest: - co-morbidities associated with rheumatoid arthritis; cardiovascular disease, lung disorders, cancer and potentially other co-morbidities the University of Manchester plan to investigate. Based on the information the University of Manchester have already collected as part of the NOAR study they will establish whether cumulative disease activity, degree of physical activity, treatment or other disease related factors are risk factors or protective factors for the different outcomes of interest.
The prevalence of RA in the UK is about 1.5% and patients with RA are at increased risk of cardiovascular comorbidities: eg unrecognized myocardial infarction (HR 2.13, 95%CI 1.13-4.03), and heart failure (HR 1.87, 95%CI 1.47-2.39). In addition, it has been estimated that over 50% of premature deaths in RA are due to cardiovascular disease.
The output from this study will inform health professionals working in the field of rheumatology about the occurrence of the most common co-morbidities in patients with IP. Identification of possible (modifiable) risk factors will also enable early intervention to prevent the development of these comorbidities in the future.
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.
Outputs achieved to date
A NOAR research forum took place at Norfolk and Norwich University Hospital September 2013 - presentations by NOAR consultant rheumatologist and senior research fellow; alongside other consultants and researchers.
An abstract including HES data was presented at the international EULAR conference in 2014 (respiratory morbidity and mortality in early rheumatoid arthritis, S Ramanujam, DPM Symmons, T Marshall, J Chipping, IN Bruce, SMM Verstappen). The University of Manchester are awaiting HES follow-up data to finalise the manuscript.
To date one abstract looking at the development of lung disorders in patients with inflammatory polyarthritis (IP)/rheumatoid arthritis (RA) was presented at EULAR in 2014. However, the number of patients with IP developing lung disorders was too small and the University of Manchester are currently awaiting follow-up HES data to increase the number of cases and write the manuscript on this topic.
Future outputs
Abstracts of outputs will be submitted for presentation at national (e.g. British Society for Rheumatology (BSR)) and international conferences (e.g. European League Against Rheumatism (EULAR) and American College of Rheumatology (ACR)). In general, the University of Manchester endeavour to write a manuscript of all abstracts presented at national and international conferences.
The University of Manchester plan to target a number of publications looking at the occurrence and development of co-morbidities in patients with IP based on the information provided by HES and linked with NOAR data. Manuscripts will be submitted to high impact peer-reviewed journals in the field of rheumatology (e.g. Annals of Rheumatic Diseases, Arthritis & Rheumatology) or to general medical journals (e.g. The Lancet, Annals of Internal Medicine).
Outputs will contain only aggregate level data with small numbers suppressed. Within the Arthritis Research UK Centre for Epidemiology all manuscripts containing data from the Norfolk Arthritis Register (NOAR) will be open access publications and thus freely available for everyone to access.
Once manuscripts are accepted a lay summary will be written and uploaded on the Centre for Musculoskeletal Research (CfMR) website. Funders of the University of Manchester research, Arthritis Research UK and the NIHR, will be informed about the publication and all publications will be referenced in the annual reports of these funding bodies.
After publication, clinically relevant publications may be cited on websites of charity organisations such as Arthritis Research UK and the National Rheumatoid Arthritis Society or the British Society for Rheumatology website. If the University of Manchester feel that the output is of high significance they will inform the press officer of the University of Manchester as well. It is very likely that one of these manuscripts will be submitted for REF (Research Excellence Framework - a system for assessing the quality of research in UK higher education institutions).
The University of Manchester work closely with patient organisations (Arthritis Research UK and National Rheumatoid Arthritis Society) to implement their research findings into patient management information leaflet or website blogs.
Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide.
DARS-NIC-333021-B6W2C-v0.11 1 February 2017 to 1 February 2020
- Title
- The Norfolk Arthritis Register (NOAR) a longitudinal observational study
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 20
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care)
Objective for processing
Rheumatoid arthritis (RA) and its subset inflammatory arthritis (IP) are chronic auto-immune diseases with a prevalence of about 1.5% in the adult population. Patients with IP are at increased risk to develop cardiovascular diseases, lung disorders and certain types of cancer. However, limited data are available on risk factors for developing these outcomes. It is therefore important to follow patients since disease onset is over a long period of time. The Norfolk Arthritis Register (NOAR) includes patients with early IP and follows these patients over time.
The purpose of the Norfolk Arthritis Register is to identify genetic and nongenetic factors which may be related to the onset of inflammatory arthritis, response to treatment and its long-term outcomes. The principal research objective of this substudy is to establish the frequency and risk factors for certain medical conditions known to be linked to inflammatory polyarthritis in particular coronary heart disease, stroke, certain types of cancer and infection. Data obtained from HSCIC will enable the University of Manchester to identify which patients have experienced the outcomes of interest: - co-morbidities associated with rheumatoid arthritis; cardiovascular disease, lung disorders, cancer and potentially other co-morbidities the University of Manchester plan to investigate. Based on the information the University of Manchester have already collected as part of the NOAR study they will establish whether cumulative disease activity, degree of physical activity, treatment or other disease related factors are risk factors or protective factors for the different outcomes of interest.
The prevalence of RA in the UK is about 1.5% and patients with RA are at increased risk of cardiovascular comorbidities: eg unrecognized myocardial infarction (HR 2.13, 95%CI 1.13-4.03), and heart failure (HR 1.87, 95%CI 1.47-2.39). In addition, it has been estimated that over 50% of premature deaths in RA are due to cardiovascular disease.
The output from this study will inform health professionals working in the field of rheumatology about the occurrence of the most common co-morbidities in patients with IP. Identification of possible (modifiable) risk factors will also enable early intervention to prevent the development of these comorbidities in the future.
Expected output
Outputs achieved to date
A NOAR research forum took place at Norfolk and Norwich University Hospital September 2013 - presentations by NOAR consultant rheumatologist and senior research fellow; alongside other consultants and researchers.
An abstract including HES data was presented at the international EULAR conference in 2014 (respiratory morbidity and mortality in early rheumatoid arthritis, S Ramanujam, DPM Symmons, T Marshall, J Chipping, IN Bruce, SMM Verstappen). The University of Manchester are awaiting HES follow-up data to finalise the manuscript.
To date one abstract looking at the development of lung disorders in patients with inflammatory polyarthritis (IP)/rheumatoid arthritis (RA) was presented at EULAR in 2014. However, the number of patients with IP developing lung disorders was too small and the University of Manchester are currently awaiting follow-up HES data to increase the number of cases and write the manuscript on this topic.
Future outputs
Abstracts of outputs will be submitted for presentation at national (e.g. British Society for Rheumatology (BSR)) and international conferences (e.g. European League Against Rheumatism (EULAR) and American College of Rheumatology (ACR)). In general, the University of Manchester endeavour to write a manuscript of all abstracts presented at national and international conferences.
The University of Manchester plan to target a number of publications looking at the occurrence and development of co-morbidities in patients with IP based on the information provided by HES and linked with NOAR data. Manuscripts will be submitted to high impact peer-reviewed journals in the field of rheumatology (e.g. Annals of Rheumatic Diseases, Arthritis & Rheumatology) or to general medical journals (e.g. The Lancet, Annals of Internal Medicine).
Outputs will contain only aggregate level data with small numbers suppressed. Within the Arthritis Research UK Centre for Epidemiology all manuscripts containing data from the Norfolk Arthritis Register (NOAR) will be open access publications and thus freely available for everyone to access.
Once manuscripts are accepted a lay summary will be written and uploaded on the Centre for Musculoskeletal Research (CfMR) website. Funders of the University of Manchester research, Arthritis Research UK and the NIHR, will be informed about the publication and all publications will be referenced in the annual reports of these funding bodies.
After publication, clinically relevant publications may be cited on websites of charity organisations such as Arthritis Research UK and the National Rheumatoid Arthritis Society or the British Society for Rheumatology website. If the University of Manchester feel that the output is of high significance they will inform the press officer of the University of Manchester as well. It is very likely that one of these manuscripts will be submitted for REF (Research Excellence Framework - a system for assessing the quality of research in UK higher education institutions).
The University of Manchester work closely with patient organisations (Arthritis Research UK and National Rheumatoid Arthritis Society) to implement their research findings into patient management information leaflet or website blogs.
Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide.
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.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 2 versions: DARS-NIC-333021-B6W2C-v0.11, DARS-NIC-333021-B6W2C-v1.7
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November 2021
1 version added: DARS-NIC-333021-B6W2C-v2.6
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December 2022
Register-wide edit DARS-NIC-333021-B6W2C-v0.11, DARS-NIC-333021-B6W2C-v1.7, DARS-NIC-333021-B6W2C-v2.6 — Datasets: legal basis: “
s261(1) and” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement. -
November 2024
1 version added: DARS-NIC-333021-B6W2C-v3.5
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April 2025
1 version added: DARS-NIC-333021-B6W2C-v4.2
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September 2025
1 version added: DARS-NIC-333021-B6W2C-v5.2
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-333021-B6W2C, “The Norfolk Arthritis Register (NOAR) a longitudinal observational study”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-333021-b6w2c/ (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-333021-B6W2C to see the original rows.