Vasculitis UK Opens Online Survey to Gauge Extent, Severity of Nerve Problems

Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to generate a better understanding of the extent and severity of nerve problems in people with vasculitis.

The “Survey of disability and neuropathy/nerve problems in vasculitis” was launched by Robert Hadden, PhD, a consultant neurologist at Kings College Hospital, in London, with Michael Collins, MD, a professor at the Medical College of Wisconsin, in the U.S., and Raashid Luqmani, MD, professor of rheumatology at University of Oxford, in the U.K.

The scientists’ goal is to measure disability in people with vasculitis, with and without damage to the nerves (neuropathy), and to gather information that may support the development of a specific patient-reported outcome for measuring disability as a result of neuropathy.

Vasculitis is characterized by inflammation and damage to the lining of blood vessels, which leads to a reduction of blood supply. That, in turn, can result in organ and tissue damage.

When vasculitis damages the nerves outside the brain and spinal cord — a condition known as peripheral neuropathy — it often causes weakness, numbness, and pain. This normally affects the extremities, namely the arms and hands and legs and feet, but other areas of the body also may be affected.

“Many vasculitis patients suffer from neuropathy, such as foot drop, loss of sensation in digits & limbs, or ‘phantom’ pain such as burning feet,” Vasculitis UK wrote in its survey announcement.

There are several types of peripheral nerves, including motor nerves that control muscles, sensory nerves that serve as sensors in the skin and elsewhere, and autonomic nerves that control involuntary functions such as heart contractions or sweat production.

All these nerves can be affected by vasculitis, but to date, the extent and severity of vasculitis associated with nerve damage has not been examined.

The ongoing survey is for people with any form of vasculitis, including ANCA-associated vasculitis, giant cell arthritis, IgA vasculitis, rheumatoid vasculitis, and many others.

It asks patients about their symptoms and affected organs, about signs of neuropathy, including symptoms in the arms and legs, and about the impact of the disease on the ability to perform daily activities. Pain scores and quality of life assessments also are measured in the survey.

The survey is completely anonymous and open to patients in the U.K., the U.S., and elsewhere. It takes about 15 minutes, and must be completed in a single session. For more information on the survey, including instructions on how to participate, click here.

Vasculitis UK is a registered charity in Great Britian that aims to support patients and families living with these disorders. It encourages support groups by providing information and advice. The organization works to raise awareness among medical professionals and the general population while supporting research into the causes, diagnosis, and treatment for vasculitis.