The Vasculitis Foundation encourages patients with vasculitis to participate in research when possible. Some studies are clinically based, others are being conducted by marketing research companies to help industry better understand disease activity.
A complete list of research studies can be found at ClinicalTrials.gov. Once you are on the page, please enter “vasculitis” in the search box or your own individual form of vasculitis for studies specifically targeted towards patients like you.
Abatacept for the Treatment of Relapsing, Non-Severe, Granulomatosis With Polyangiitis (Wegener’s)
Multi-center, randomized, double-blind, placebo-controlled trial to evaluate the efficacy of abatacept to achieve sustained glucocorticoid-free remission in patients with relapsing non-severe GPA. Patients who enter the trial will be maintained on a stable dose of their maintenance immunosuppressive agent which may include methotrexate (MTX), azathioprine (AZA), or mycophenolate (MA) and will undergo a blinded randomization to receive abatacept or placebo. Patients will additionally receive prednisone 30 mg daily that will then be tapered to zero using a standardized tapering schedule.
Please click here for more information on ABROGATE.
This study is being conducted by Azul Seven with research funded by Genentech.
Why am I being asked to take part in this research study?
You have been approached because you live in the United States, you have received a medical diagnosis and are being treated for Giant Cell Arteritis (GCA) with or without Polymyalgia Rheumatica (PMR)
We are specifically seeking patients who live in Florida, Texas, and the southwest of the US. This study is only recruiting patients in the US.
What is the reason for doing the study?
The purpose of this study is to learn more about the GCA patient care experience from the perspective of GCA patients. This research is part of a larger project involving the medical community’s identification and development of an optimal GCA patient care program.
Who is being asked to participate in this research?
Azul Seven is hoping to interview eight (8) GCA patients who live in or around your region of the country. Participants will range from people with a recent GCA diagnosis to those who have been living with and managing their symptoms for any duration after receiving a GCA diagnosis. The main requirement is that you agree to be interviewed by a team of two researchers who will ask questions about your personal experience with GCA from the time you can recall first experiencing severe headaches and/or other early symptoms of GCA, leading up to when you first sought medical care for symptoms, through to present time.
Please click here to learn more about the study.
Please call for more information or to schedule your interview: Kristina Woodburn or phone: 612-767-4335
What are the benefits to me?
You will be compensated in the amount of $150.00 that will be provided by the research team to you after your interview. Compensation will be paid in the form of a gift card issued by Visa or similar gift card vendor.
Research Opportunity for patients with Granulomatosis with polyangiitis (GPA/formerly Wegener’s) and for patients with Skin Cutaneous Vasculitis or Henoch Schönlein Purpura (HSP or IgA Vasculitis)
The National Institutes of Health’s Rare Diseases Clinical Research Network (RDCRN) wants to learn more about your experience with your rare disease. They are seeking your input to help design messages that you feel are more reflective of your experience. Learning more about you and your story will help the RDCRN understand how they can better help patients just like you.
They are seeking participants in two areas: virtual (online) focus groups and virtual (online) individual interviews that will be conducted from the comfort of your own home or other desired location. You are free to participate in one or both of these opportunities.
There is no cost to you to participate! The RDCRN wants to hear more about your experience, and as compensation for your time, you will receive a $10 Amazon gift card (via a digital link sent to your e-mail address) upon the completion of your focus group or interview. If you complete both a focus group and an interview, you will receive two (2) $10 Amazon gift cards.
If you are interested in participating, please e-mail the RDCRN directly with “Interested in Interview and/or Focus Group” typed in the subject line.
If you have any questions, please e-mail the RDCRN directly and type “Focus Group Question” or “Interview Question” in the subject line.
Click here to access the poster for GPA/formerly Wegener’s to learn more details.
Click here to access the poster for HSP/IgA Vasculitis to learn more details.
The RDCRN hopes to hear more about you and your journey!