Help Us Move Research Forward

Currently, there are many researchers, and doctors here in Canada, the United States, Europe and else where with diverse scientific backgrounds and expertise who are turning their attention to vasculitis and working together to uncover important knowledge and develop treatments that will effectively manage symptoms. Through generous contributions from donors, corporate sponsors, fervent fundraisers, the Vasculitis Foundation among others we are making progress. The investment of time and money has led to significant results for people affected by vasculitis. However, although much progress has been made, many questions regarding vasculitis remain unanswered.

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved. Below CVA shares information about research. If you are a patient and wish to participate in clinical trials and other studies, you, your family and/or physicians may decide whether specific studies are appropriate for you.

Please note, we do not endorse or recommend participation in any specific clinical trials or studies,the decision to do so is entirely up to you.

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Important Research Survey to start 2021!
Even though the PEXIVAS study stopped recruiting GPA and MPA patients a couple of years ago there are still things that continue to be learned from the study, or new questions that have arisen as a result of that important study.  For example, researchers now want to learn more about how GPA and MPA patients weigh specific pros and cons of treatment options that include plasma exchange.
If you are a GPA, or MPA, patient,please complete a survey about plasma exchange for the treatment of ANCA associated vasculitis and kidney disease! This study seeks to understand how patients with ANCA associated vasculitis and kidney disease view the benefits and harms of plasma exchange.The survey is designed to:

  • collect information on how patients view the trade off between a lower risk of dialysis but a higher risk of serious infection with plasma exchange
  • Participation is anonymous and all responses are confidential
  • The survey will take approximately 15 minutes to complete
  • This study will inform shared decision making and clinical practice guidelines

The survey is located here: https://www.surveymonkey.com/r/optionsvasculitis

This study has been reviewed by the Hamilton Integrated Research Ethics Board, REB #2170

On behalf of the VFC Board, we hope you will set aside about 15 minutes of your time to complete the above survey.

The Following Are Links to Research:

Get Involved in Research

For research to be meaningful and successful, the perspectives of people with vasculitis and their caregivers are essential. If you are interested in taking part in research, there are several ways you can get involved.

Calgary

Canada Wide

  • The Canadian Network for Research on Vasculitides. CanVasc is the Canadian network for research on vasculitides. one important aim of CanVasc is to help conduct studies on vasculitis, provide support and educational material on vasculitides for physicians and other health care professionals and, eventually, optimize the therapeutic management of patients with these rare diseases. Please click here to access CANVASC
  • The Hospital for Sick Children, Toronto. Sick Kids
  • Vasculitis Foundation Canada

International

US

  • The Vasculitis Clinical Research Consortium (VCRC) is a group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis. The VCRC has a contact registry for patients who wish to be contacted about clinical research opportunities and updates on the progress of the VCRC research projects – Please click here to access the VCRC
  • The RDCRN VCRC Patient Contact Registry and electronic resources are important for patients worldwide. 
  • Vasculitis Foundation

Europe

Other Links

Vasculitis Patient-Powered Research Network (VPPRN) – Is a team of patients with vasculitis, caregivers, researchers, data specialists, and providers on a daily mission to share and learn from one another with a vision for the future in clinical vasculitis research.

National Organization for Rare Disorders (NORD)

Patient Advocacy Groups

Vasculitis Pregnancy Registry