The Vasculitis Self-Management Study

Excerpts from a letter from Carolyn Kalinowski, project manager for the Vasculitis Self-Management Study:

The Vasculitis Self-Management Study is funded by the Wegener’s Granulomatosis Association, Inc. (WGA) and is the result of a collaboration between investigators at the Glomerular Disease Collaborative Network (GDCN) and the Thurston Arthritis Research Center at the University of North Carolina at Chapel Hill. Dr. Robert DeVellis, a social and health psychologist, is the principal investigator, and Carolyn Kalinowski, MPH is the project director.

The purpose of the study is to learn more about how individuals living with small vessel vasculitis adhere to the treatment regimens prescribed by their physicians. All individuals who participate will be asked to complete one
mailed, self-administered questionnaire about how easy or difficult it is for them to carry out different aspects of their treatment plan, barriers and facilitators to carrying out prescribed behaviors, their feelings about their
vasculitis, and how they believe their condition affects their daily life. Married participants will also be asked to answer some questions about their relationship with and support they receive from their spouse. Some individuals will be randomly selected and asked to complete part of the survey a second time.

Recruitment is ongoing and we have been able to recruit a good number of patients with help from the GDCN and the WGA. However, the rarity of small vessel vasculitis will make it challenging for us to reach our recruitment goal of 300 participants. In addition, so far we have very few Churg Strauss Syndrome patients enrolled but would very much like to have them represented in our study sample.

The Vasculitis Self-Management Study

Help us understand how individuals living with vasculitis manage their condition! We are still seeking participants for the Vasculitis Self-Management Study. This is a research study for individuals who are living with vasculitis (or related conditions). We hope to learn more about the experiences that individuals with vasculitis have with carrying out the treatment plans suggested by their doctors. If you decide to participate, we will ask you to complete a mailed survey that asks you about your feelings about your vasculitis and the tasks you perform to manage your illness. Participants will receive $10 for completing the survey.

Do You Qualify?

You may qualify for this study if:

You are over 18 years of age
You have been diagnosed with a form of vasculitis, such as:
Wegener’s Granulomatosis
Churg-Strauss syndrome,
ANCA Disease
Microscopic polyangiitis,
Glomerulonephritis,
Several others (ask us if you are not sure!)

To Find Out More: Please call Carolyn Kalinowski, Project Director, at 919-966-0561 or toll free at 1-866-827-2862 if you would like more information about this study. You may also email Carolyn at ckalino@email.unc.edu. Your participation will help us better understand how individuals living with vasculitis manage their illness. You are the expert about your condition, and we want to learn from you!