Skip to main content

Research Repository

See what's under the surface


Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018 (2019)
Journal Article
Merkel, P. A., Direskeneli, H., Tugwell, P., Tómasson, G., Shea, B., Milman, N., …Hill, C. (2019). Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018. Journal of Rheumatology, 46(9), 1198-1201. https://doi.org/10.3899/jrheum.181072

OBJECTIVE: The OMERACT Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV). METHODS: An international Delphi exercise conducted among investigators identified items considered... Read More about Update on outcome measure development in large-vessel vasculitis: Report from OMERACT 2018.

Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis (2019)
Journal Article
Tomasson, G., Farrar, J. T., Cuthbertson, D., McAlear, C. A., Ashdown, S., Cronholm, P. F., …Merkel, P. A. (2019). Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis. Journal of Rheumatology, 46(8), 928-934. https://doi.org/10.3899/jrheum.171405

OBJECTIVE: The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis. METHODS: Data... Read More about Feasibility and construct validation of the Patient Reported Outcomes Measurement Information System (PROMIS) in systemic vasculitis.

The OMERACT emerging leaders program: The good, the bad, and the future (2019)
Journal Article
Flurey, C. A., Tugwell, P. S., Black, R. J., Halls, S., Page, M. J., Robson, J. C., …Richards, B. (2019). The OMERACT emerging leaders program: The good, the bad, and the future. Journal of Rheumatology, 46(8), 1047-1052. https://doi.org/10.3899/jrheum.181126

The Journal of Rheumatology Copyright © 2019. All rights reserved. Objective. To describe the experience of the first OMERACT Emerging Leaders Program (ELP). Methods. A Delphi process identified positive aspects, areas for improvement, and future dir... Read More about The OMERACT emerging leaders program: The good, the bad, and the future.

Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes (2019)
Journal Article
Robson, J., Jayne, D., Merkel, P., & Dawson, J. (2019). Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes. Patient Related Outcome Measures, 10, 37-42. https://doi.org/10.2147/PROM.S163601

The systemic vasculitides are a group of multisystem diseases, which can be life and organ threatening. High-dose immunosuppressants are required to control inflammation in vital organs, such as the kidneys, lungs, skin, joints, and eyes. Patients re... Read More about Systemic vasculitis and patient-reported outcomes: How the assessment of patient preferences and perspectives could improve outcomes.

Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health (2019)
Journal Article
Milman, N., McConville, E., Robson, J. C., Boonen, A., Tugwell, P., Wells, G. A., …Merkel, P. A. (2019). Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health. Journal of Rheumatology, 46(10), 1415-1420. https://doi.org/10.3899/jrheum.181073

Objective: Aspects of ANCA-associated vasculitis (AAV) prioritized by patients with AAV were described using the International Classification of Function, Disability, and Health. Methods: Items identified during 14 individual interviews were incorpor... Read More about Updating OMERACT core set of domains for ANCA-associated vasculitis: Patient perspective using the international classification of function, disability, and health.

Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire (2018)
Journal Article
Robson, J. C., Dawson, J., Doll, H., Cronholm, P., Milman, N., Kellom, K., …Merkel, P. (2018). Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire. Annals of the Rheumatic Diseases, 77(8), 1158-1165. https://doi.org/10.1136/annrheumdis-2017-212713

© 2018 Article author(s). Objectives To finalise and validate a disease-specific patient-reported outcome (PRO) measure: The ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire develope... Read More about Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire.

Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure (2018)
Journal Article
Robson, J. C., Dawson, J., Cronholm, P., Milman, N., Kellom, K., Ashdown, S., …Merkel, P. (2018). Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure. Patient Related Outcome Measures, 9, 17-34. https://doi.org/10.2147/PROM.S144992

ABSTRACT Objective: The anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An... Read More about Health related quality of life in ANCA associated vasculitis and item generation for a disease specific patient reported outcome measure.

Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016 (2017)
Journal Article
Sreih, A. G., Alibaz-Oner, F., Kermani, T. A., Aydin, S. Z., Cronholm, P. F., Davis, T., …Merkel, P. A. (2017). Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016. Journal of Rheumatology, 44(12), 1933-1937. https://doi.org/10.3899/jrheum.161467

Copyright © 2017. All rights reserved. Objective. Among the challenges in conducting clinical trials in large-vessel vasculitis (LVV), including both giant cell arteritis (GCA) and Takayasu arteritis (TA), is the lack of standardized and meaningful o... Read More about Development of a core set of outcome measures for large-vessel vasculitis: Report from OMERACT 2016.

Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis (2017)
Journal Article
Robson, J., Pauling, J. D., Domsic, R. T., Saketkoo, L. A., Almeida, C., Withey, J., …Hewlett, S. (2018). Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis. Arthritis Care and Research, 70(9), 1373-1384. https://doi.org/10.1002/acr.23475

© 2017, American College of Rheumatology Objective: Raynaud's phenomenon (RP) is the most common manifestation of systemic sclerosis (SSc). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self-report. A thoroug... Read More about Multinational Qualitative Research Study Exploring the Patient Experience of Raynaud's Phenomenon in Systemic Sclerosis.

Multinational qualitative research study exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis (2017)
Journal Article
Pauling, J., Domsic, R., Saketkoo, L., Almeida, C., Withey, J., Jay, H., …Hewlett, S. (2018). Multinational qualitative research study exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis. Arthritis Care and Research, 70(9), 1373-1384. https://doi.org/10.1002/acr.23475

Objective. Raynaud’s phenomenon (RP) is the most common manifestation of systemic sclerosis (SSc). RP is an episodic phenomenon, not easily assessed in the clinic, leading to reliance on self-report. A thorough understanding of the patient experience... Read More about Multinational qualitative research study exploring the patient experience of Raynaud’s phenomenon in systemic sclerosis.

Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis (2017)
Journal Article
Shea, J. A., Kellom, K. S., Robson, J. C., Dawson, J., Cronholm, P. F., Ashdown, S., …Merkel, P. (2018). Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis. Rheumatology International, 38(4), 675-682. https://doi.org/10.1007/s00296-017-3855-6

© 2017, The Author(s). Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytopla... Read More about Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis.

A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group (2017)
Journal Article
Black, R. J., Robson, J. C., Goodman, S. M., Hoon, E., Lai, L. Y., Simon, L. S., …Hill, C. L. (2017). A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group. Journal of Rheumatology, 44(11), 1754-1758. https://doi.org/10.3899/jrheum.161083

Copyright © 2017. All rights reserved. Objective: The need for a standardized instrument to measure the effect of glucocorticoid (GC) therapy has been well documented in the literature. The aim of the first GC Special Interest Group was to define a r... Read More about A patient-reported outcome measure for effect of glucocorticoid therapy in adults with inflammatory diseases is needed: Report from the OMERACT 2016 special interest group.

OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis (2017)
Journal Article
Robson, J. C., Tomasson, G., Milman, N., Ashdown, S., Boonen, A., Casey, G. C., …Merkel, P. A. (2017). OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis. Journal of Rheumatology, 44(10), 1529-1535. https://doi.org/10.3899/jrheum.161139

© Copyright 2017 The Journal of Rheumatology. All rights reserved. Objective. The antineutrophil cytoplasmic antibody-associated vasculitides (AAV) are multiorgan diseases. Patients with AAV report impairment in their health-related quality of life (... Read More about OMERACT endorsement of patient-reported outcome instruments in antineutrophil cytoplasmic antibody-associated vasculitis.

Are the 1990 American College of Rheumatology vasculitis classification criteria still valid? (2017)
Journal Article
Seeliger, B., Sznajd, J., Robson, J. C., Judge, A., Craven, A., Grayson, P. C., …Luqmani, R. A. (2017). Are the 1990 American College of Rheumatology vasculitis classification criteria still valid?. Rheumatology, 56(7), 1154-1161. https://doi.org/10.1093/rheumatology/kex075

© The Author 2017. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objectives. Advances in diagnostic techniques have led to better distinction between types of vasculitis, potentially affe... Read More about Are the 1990 American College of Rheumatology vasculitis classification criteria still valid?.

The association of vascular risk factors with visual loss in giant cell arteritis (2016)
Journal Article
Robson, J., Yates, M., MacGregor, A. J., Robson, J. C., Craven, A., Merkel, P. A., …Watts, R. A. (2017). The association of vascular risk factors with visual loss in giant cell arteritis. Rheumatology, 56(4), 524-528. https://doi.org/10.1093/rheumatology/kew397

© The Author 2016. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objective. Blindness is a recognized complication of GCA; however, the frequency of and risk factors for this complication... Read More about The association of vascular risk factors with visual loss in giant cell arteritis.

Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study (2016)
Journal Article
Robson, J. C., Kiran, A., Hamilton, W., Emin, A., Maskell, J., Hutchings, A., …Luqmani, R. (2016). Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study. Journal of Rheumatology, 43(6), 1085-1092. https://doi.org/10.3899/jrheum.151024

Copyright © 2016. All rights reserved. Objective. To evaluate the risk of cerebrovascular disease and cardiovascular disease (CVD) in patients with giant cell arteritis (GCA), and to identify predictors. Methods. The UK Clinical Practice Research Dat... Read More about Which patients with giant cell arteritis will develop cardiovascular or cerebrovascular disease? A clinical practice research datalink study.

Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12 (2015)
Journal Article
Merkel, P. A., Mackie, S. L., Aydin, S. Z., Direskeneli, H., Sreih, A., Alibaz-Oner, F., …Kamali, P. A. M. (2015). Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12. Journal of Rheumatology, 42(12), 2465-2469. https://doi.org/10.3899/jrheum.141144

© Copyright 2015 The Journal of Rheumatology. All rights reserved. Objective. The rarity of large vessel vasculitis (LVV) is a major factor limiting randomized controlled trials in LVV, resulting in treatment choices in these diseases that are guided... Read More about Update on outcome measure development for large vessel vasculitis: Report from OMERACT 12.

Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process (2015)
Journal Article
Robson, J. C., Milman, N., Tomasson, G., Dawson, J., Cronholm, P. F., Kellom, K., …Merkel, P. A. (2015). Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process. Journal of Rheumatology, 42(11), 2204-2209. https://doi.org/10.3899/jrheum.141143

The Journal of Rheumatology Copyright © 2015. All rights reserved. Objective. Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheuma... Read More about Exploration, development, and validation of patient-reported outcomes in antineutrophil cytoplasmic antibody-associated vasculitis using the OMERACT process.

Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials (2014)
Journal Article
Höglund, P., Robson, J., Doll, H., Suppiah, R., Flossmann, O., Harper, L., …Luqmani, R. (2015). Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials. Rheumatology, 54(3), 471-481. https://doi.org/10.1093/rheumatology/keu366

© The Author 2014. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. Objective. Granulomatosis with polyangiitis and microscopic polyangiitis are ANCA-associated vasculitides (AAVs). The Vasc... Read More about Glucocorticoid treatment and damage in the anti-neutrophil cytoplasm antibody-associated vasculitides: Long-term data from the European Vasculitis Study Group trials.