Vasculitis in general is a rare disease and some types of vasculitis are very rare. Some research is carried out in the laboratory and patients are not involved, but for purposes of clinical research and clinical trials, those carrying out the research need people with vasculitis to take part in clinical research and in trials of new drugs.
Modern medicine has to be “evidence based”. To get sufficient evidence for a piece of clinical research to be convincing it needs numbers. A piece of research involving only ten people would be worthless, with a hundred it might be significant and if it involved a thousand it might be convincing evidence.
With rare diseases, it is very difficult to get anything like these numbers in one place, so rare disease research tends to involve research at many centres or hospitals around the UK. Many pieces of clinical research are now collaborative projects involving many centres in Europe or even worldwide. Only this way can the data from enough patients be collected to produce reliable and trusted “evidence”.
As a vasculitis patient, you may be able to help in clinical research. This could be just a matter of giving permission for your anonymised clinical record to be entered on a research database, or giving a blood sample, or trying out a new procedure or drug. This research may or may not benefit you personally, but it may help others in the future.
No matter how much money is poured into vasculitis research, there will be no advances without patients being involved. The rarer your type of vasculitis, the more valuable is your participation in vasculitis research.
Most trials do involve travelling to participating hospitals, although in some cases, travel expenses may be re-imbursed.
Several research projects that are “recruiting” volunteers. These are as follows:
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. If you attend any of these hospitals please ask your consultant to refer you to the DCVas team.
Biomarker – MPO ANCA A study looking for a “Biomarker” that will show disease activity in ANCA vasculitis. At present this is only for patients with MPO ANCA (mainly people with microscopic polyangiitis).
GCA Trial A trial of a new drug for treating Giant Cell Arteritis (GCA) cases where conventional high dose steroid treatment is not working of the disease keeps relapsing.
Belimumab Trial A trial of a new drug for preventing relapse (flares) in ANCA vasculitis.
Mepolizumab Trial A trial of mepoluzimab, a new drug for the treatment of EGPA – Churg Strauss Syndrome.
FAB-V trial of physical activitiy and behaviour change support versus standard care
Please do your bit to support advances in vasculitis diagnosis and treatment by taking part in clinical research and trials if you can.