Research and Education Supported by Vasculitis UK
- Vasculitis UK has direct access to a large number of existing patients who have vasculitis and routinely offers practical support for clinical research by, for example, encouraging patients and healthy controls to participate in clinical trials or direct mailing of members for surveys and questionnaires.
- Withdrawal of immunosuppression in patients with ANCA-associated vasculitis or SLE at low risk of relapse will help reduce rates of infection and improve vaccination responses without an increase in relapse rates
- A specific immune signature can be identified in such patients and define a set of markers that could usefully stratify patients with regards need for continued immunosuppression
- An App to Support Vasculitis Patients and Research - In conjunction with patientMpower Prof Mark Little and Prof Alan Salama have designed a smartphone/tablet/web app designed to support patients with vasculitis. This includes personalised tips on staying well, help with medication and adherence, a place for storing health data (such as blood pressure and blood test results) and a means of enhancing patient-physician interactions. The app is now available to download for iOS and for Android devices - more details here
- Diagnostic and Classification Criteria for Primary Systemic Vasculitis - The aim of this international study is to develop new diagnostic and classification criteria for the different types of primary vasculitis. The study will allow the investigators to improve the ability to distinguish patients with vasculitis from those who do not have the disease (diagnostic criteria) and to distinguish between different forms of vasculitis (classification criteria). The DCVAS study is led by Professor Raashid Luqmani (Chief Investigator) at the University of Oxford. For the UK sites participating in this research see: List of Participating Sites - UK
- Improving Outcomes for Patients with Vasculitis - Questionnaire analysis undertaken by the North-West Vasculitis Group, Manchester
- Fatigue and ANCA Associated Vasculitis - Dr Andrew McClean, Birmingham University Hospital
- MRI Evaluation of Tracheal Inflammation (METI) Research Study - University College Hospital, London (ongoing research - details from John Mills)
- Evaluation of Rituximab - 2012/13 - Report to be presented to NICE (National Institute for Clinical Excellence) for the licensing of Rituximab in the treatment of Wegener's Granulomatosis (GPA) and Microscopic Polyangiitis. The report will be based on comments and observations made by vasculitis patients
- ANCA Vasculitis Genetic Study - 2012/13 - Vasculitis UK have been instrumental in helping to recruit volunteers to take part in this study which is being undertaken at Addenbrooke's Hospital in Cambridge.
- RUDY study - A study in rare diseases of the bones, joints and blood vessels to improve understanding and to develop new tests and treatments, headed up by a research team at the University of Oxford
- FAB-V Trial - a trial of physical activity and behaviour change support versus standard care
Balancing Drug continuation with drug withdrawal in SLE and ANCA associated vasculitis
This important research project is being run by Prof Alan Salama from the UCL Centre for Nephrology at the Royal Free Hospital and Lorraine Harper, Consultant Nephrologist at Birmingham Queen Elizabeth Hospital.
The project is exploring whether ...