COVID19
Guidance from the British Society for Rheumatology – November 5th 2020
ANCA Vasculitis & the Patient Experience
Over the course of summer 2019, we at Vasculitis UK have been working on a project in collaboration with Vifor Pharma of Zurich. The aim of the project is to show the patient prospective of their experience of living with ANCA Vasculitis. This has involved a specialist team and a camera crew to make interviews with several Vasculitis UK members who volunteered to help in the project. The results can be seen on the project website.
Vasculitis Rare Disease Group
The Vasculitis Rare Disease Group has developed from the UK and Ireland Vasculitis registry initiative UKIVAS. The group members represent Vasculitis units across the UK and participate in Vasculitis research and care.
The Vasculitis RDG website is currently not complete but is available to view at: RareRenal.org – Vasculitis Rare Disease Group
Vasculitis and the Dental Team
An article written by John Mills, Chairman – Vasculitis UK – June 2016 for the British Dental Team Journal ( BDJ ): Vasculitis and the Dental Team
Approach to a patient with vasculitis
A PowerPoint presentation – “Approach to a patient with vasculitis” www.slideworld.com
Clinical Trials
This is an American website funded by the National Institutes of Health. All new clinical trials (for all diseases) should be registered with this organisation before starting and some of the results of the trials should be made available after completion. Some other non-trial research is also registered with the site. The information on the site is freely available and can be used to look for new clinical trials for a specific disease and where the clinical trials are taking place. Even though the site is American most European clinical trials will also be registered here. www.clinicaltrials.gov
European League Against Rheumatism (The) [EULAR]
The main professional organisation for European Rheumatologists’ official site. The site contains links to many of their published guidelines on the management of systemic vasculitis (and many other inflammatory diseases) and on managing the side effects of drugs such as steroids and other immunosuppressants. www.eular.org
European Vasculitis Study Group (The) [EUVAS]
A collaboration of many medical professionals and researchers passionately interested in the treatment of systemic vasculitis. EUVAS has organised several major international clinical trials over the last two decades. The website is very useful containing published articles on the diagnosis, classification and management of vasculitis. The results of their clinical trials are posted to the website as are details of clinical trials underway. The website also contains links to treatment guidelines for managing systemic vasculitis. www.vasculitis.org
UKIVAS: a registry for patients with vasculitis in the UK and Ireland
A new project, the aim of which is to collect anonymised information about patients throughout the UK with different types of vasculitis, in a uniform way. Those involved in the project include the Vasculitis Rare Disease Working Group and is supported by Kidney Research UK and Vasculitis UK.
Further information is available at: Rare.Renal.Org
Diagnostic and Classification Criteria in Vasculitis Study (DCVAS)
DCVAS is a multinational observational study and aims to develop diagnostic criteria and update classification criteria in vasculitis. www.dcvas.org
Vasculitis Clinical Research Consortium (The) [VCRC]
The Vasculitis Clinical Research Consortium (VCRC) is an American based integrated group of academic medical centres, patient support organisations and clinical research resources dedicated to conducting clinical research in different forms of vasculitis. The website contains links to pages on specific diseases and their treatment. It also contains links which allow patients to register their details on disease specific contact registries. www.rarediseasesnetwork
The Renal Association: About eGFR (Glomerular Filtration Rate)
Patient information on estimated Glomerular Filtration Rate www.renal.org – About eGFR
Nose Reconstruction for Vasculitis
Prosthetics for the Nose – A Personal Story