Glucocorticoids Explore (GCX)
Glucocorticoids Explore (GCX)
Your Experience With Steroids Lets Us Understand What Patients Truly Face
Now Enrolling
How have steroids impacted your life?
Glucocorticoids (also called GCs or “steroids”) are commonly used to treat vasculitis and control inflammation. While they are effective, many people take them for long periods, and experiences can vary.
Through GCs Explore (GCX) study, the VPPRN and Amgen Inc. aim to better understand how people with vasculitis use or choose to not use steroids, their experiences with reducing doses, and how steroid use impacts symptoms and quality of life.
This study is conducted in collaboration with Amgen Inc.
This study is open to members of the VPPRN only.
- Not a member? Click JOIN VPPRN button below to join for free
- Already a VPPRN Member? Click MEMBER LOGIN to join the study.
Overview of the GCX Study
Aim of the study
Glucocorticoids (also called “steroids”) are commonly used to treat vasculitis and control inflammation. While they are effective, many people take them for long periods, and experiences can vary.
Through GCs Explore (GCX) study, the VPPRN and Amgen Inc. aim to better understand how people with vasculitis use or choose to not use steroids, their experiences with reducing doses, and how steroid use impacts symptoms and quality of life.
Your participation may help improve future treatment approaches and support more patient-centered care.
What’s involved?
GCX is a one-time, online, 15-25 minute questionnaire about your experience with steroids.
Who can join?
This study is open only to members of the Vasculitis Patient-Powered Research Network. If you are not yet a member, please join the VPPRN here then come back to join this study.
- Adult patients with any type of vasculitis
- Individuals WITH or WITHOUT a history of steroids exposure
- All US and non-US based patients are eligible.
Participation is completely voluntary and all information you provide will be anonymized.
Rights to refuse
Whether or not you take part in a research study is up to you. You can choose not to participate, or you can agree to take part and later change your mind. Your decision will not be held against you.
You can ask all the questions you want before you decide.
Additional questions and study contact
This study is open only to members of the Vasculitis Patient-Powered Research Network.
Our research team is here to make participation in this study easy for you.
The study coordinator is available for you to contact if you have any questions or concerns. Contact the Study Team at VPPRN@PennMedicine.upenn.edu with questions about the GCX study
The Vasculitis Patient-Powered Research Network (VPPRN) is approved by the University of South Florida IRB Pro00018514
Click HERE to learn more about our VPPRN Privacy Pledge.
Meet the Study Team
This study was created by patients, for patients.
Meet the patient research partners behind GCX
Joseph Clayton – Patient Research Partner
“I am a recently retired communications and public affairs executive with broad career experience in health care delivery, patient-centered comparative effectiveness research, public health, nutrition, and policy. I received my Giant Cell Arteritis diagnosis in 2015 and have spent more than a few years on and off steroids. Thankfully, steroid-sparing biologics including Tocilizumab have enabled me to minimize steroid treatment during my vasculitis flare ups. With some exceptions, I lead a normal life.
Research designed to get to the bottom of how vasculitis affects patients and their families has not always included the most important people: patients! I am grateful for VPPRN Partnership and its investment in understanding individual patient experiences and how to improve clinical outcomes for those of us with autoimmune diseases like vasculitis.
As any vasculitis patient understands all too well, steroids can be both a major blessing and a frustrating curse. Glucocorticoids Explore (GCX) is a new opportunity for patients to share their steroid experiences – good and bad – with the clinicians and patient advocates at VPPRN.
Please join me in participating in this important study and expanding our understanding of vasculitis patient experiences and how to improve them!”
Mindy Silverman – Patient Research Partner
“My name is Mindy. I was diagnosed with P ANCA Vasculitis, MPA with kidney involvement in September 2023. I began high doses of steroids and began Rituximab infusions. Unfortunately, I was allergic to the infusions and landed in the ICU for 8 days. It was definitely the scariest time of my life. All I knew about Vasculitis was that my uncle had passed from Polyarteritis Nodosa (PAN) when I was a little girl. Back then, the only treatment options available were steroids. He was given a very short life expectancy and miraculously lived 25 years with the disease. I am grateful for the Vasculitis Foundation, the research it provides and the medications now available. As rare as this disease is, I know that I am not alone. I became a Patient Research Partner because I want to help further the advancements and hopefully, meet others that are going through similar struggles.”
Not a Member of the VPPRN?
If you aren’t a member of the Vasculitis Patient-Powered Research Network (VPPRN), we invite you to join today!
We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide. We’ve made it easy for you to contribute this data to make vasculitis research happen now.
Questions? Email VPPRN@PennMedicine.upenn.edu
Interested in Other Research Opportunities?
The goal of the VPPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
Learn about current opportunities to participate in research.