Vasculitis Research

Participate in Vasculitis Research

Research ParticipationVasculitis 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:

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Vasculitis Renal and Respiratory Training Day - Hammersmith Hospital

30 Jul 2019

RUDY Study

29 Oct 2015

A study in rare diseases of the bones, joints and blood vessels.

Cortisone (Steroid) Information Website

13 Jan 2014

A new indepth website publishing information about steroids for patients

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