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- Qualifications:MBBS BSc (Hons) PhD FRCP
- Position:Associate Professor in Rheumatology
- Department:Faculty of Health and Applied Sciences (HAS)
- Telephone:+4411732 81973
- Email:Jo.Robson@uwe.ac.uk
About me
I am an Associate Professor in Rheumatology with a specialist research and clinical interest in the Systemic Vasculitides, specifically ANCA-associated vasculitis and Giant Cell Arteritis, in particular, patient focused research and outcome measures.
Area of expertise
My research interests are in the development of patient reported outcome measures (PROMS) and health related quality of life in the rare rheumatic diseases including systemic vasculitis and connective tissue diseases. Member of the UWE Musculoskeletal Management Behaviour Change and Outcomes (MAMBO) research group.
I lead the international development of a PROM for ANCA associated vasculitis, the AAV PRO.
Underpinning qualitative work was performed with patients from the UK, USA and Canada. Health-related quality of life in ANCA-associated vasculitis and item generation for a disease-specific patient-reported outcome measure (nih.gov)
Validation study was performed in the UK and USA via collaboration with the patient groups Vasculitis UK and the Vasculitis Patient Powered Research Network. Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire - PubMed (nih.gov)
The AAV-PRO has been translated into 14 languages and is now being embedded into registries and clinical trials. Please contact us for details on its use or follow @aavpro for more information.
I am also leading the development of a PROM for patients with Giant Cell Arteritis, the GCA PRO.
Underpinning qualitative work performed with patients from the UK and Australia. Funded by grant from the University Hospitals Bristol and Weston Above and Beyond. Patient perceptions of health-related quality of life in giant cell arteritis; international development of a disease-specific Patient-Reported Outcome Measure - PubMed (nih.gov)
Validation study has been performed in >400 patients via 38 NHS Rheumatology and Ophthalmology sites in the UK and analysis is underway. Funding from NIHR Research for Patient Benefit.
The Outcome Measures in Rheumatology (OMERACT) Glucocorticoid Impact Working group has developed a core domain set for what to measure in clinical trials. Glucocorticoids – OMERACT
I am leading the development of PROM for Glucocorticoid Impact – the Steroid PRO. Qualitative work has been completed in the UK, Australia and USA and will be validated in an international survey in 2021. Funding from Above and Beyond UHBW and Vifor Pharma.
Steering committee chair of the American College of Rheumatology/ European League Against Rheumatism (ACR/EULAR) Diagnostic and Classification Criteria for Primary Systemic Vasculitis (DCVAS) study, a steering committee member of the UKIVAS registry study and member of the European Vasculitis Society (EUVAS).
Consultant Rheumatologist at the Bristol Royal Infirmary Bristol Royal Infirmary - What We Do | University Hospitals Bristol NHS Foundation Trust (uhbristol.nhs.uk)
Publications
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