VPPRN TAK-IMPACT Study
TAK-IMPACT Study
New VPPRN Research Study on Takayasu’s Arteritis – NOW ENROLLING!
We want to know: What does day-to-day life look like for patients with Takayasu’s arteritis?
Currently, there is very little information about what it’s like to live with Takayasu’s arteritis. We don’t fully understand how it affects patients day-to-day, what treatments have been used, or what they feel is most important in managing the condition. Most of the current research focuses on how the disease affects the body, but not on patients’ personal experiences or concerns.
That’s why the VPPRN is collaborating with researchers at the University of Edinburgh on an ongoing study, TAK-IMPACT (Investigating Management, Perspectives and Attitudes towards Care in Takayasu’s Arteritis), and why we’re inviting you to take part.
In this study, we aim to better understand the impact of Takayasu’s arteritis from the perspective of those living with it.
With your participation, you may help guide this work to ensure we capture real-world treatment experiences, daily challenges, and what matters most to patients in their care.
How can you participate?
This study is open to adult patients who are members of the VPPRN.
- Already a VPPRN Member?
- Check your email for the study invitation and survey link.
- Not a member yet?
- Click JOIN THE VPPRN button below to sign up.
- Once you complete your registration forms, you’ll receive the link to participate in the TAK-IMPACT study.
Questions? Contact the Study Team
About the TAK-IMPACT Study
Through this study, we aim to understand the impact of Takayasu’s arteritis on personal experiences as it relates to:
- Day-to-day impact
- Impact of treatment
- What is the most important in managing the condition
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 living with Takayasu’s arteritis (TAK)
- All US and non-US based patients are eligible.
- Participation is completely voluntary and all information you provide will be de-identified.
- We ask that you complete a one-time questionnaire about yourself and your health.
- The questionnaire will take approximately 25 minutes to complete.
- We may contact you regarding your responses to the questions for additional clarification or to address any gaps in data.
- The questionnaire is available online. No travel is required.
There is still much to learn about what it’s like to live with Takayasu’s arteritis, including its impact on daily life, treatment experiences, and what matters most to patients. This study will capture the real-world perspectives of people living with the disease to better understand their needs and priorities. By sharing their experiences, participants can help shape future research and improve care for others with Takayasu’s arteritis.
There may be no direct benefits to you from taking part in this research.
However, your participation will help researchers better understand what it is like to live with Takayasu’s arteritis, including its impact on daily life, treatment experiences, and what matters most to patients. This knowledge may help guide future research and improve care for people living with Takayasu’s arteritis.
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.
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 Christine Yeung from the Study Team at christine.yeung@pennmedicine.upenn.edu with your questions.
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
Sarayah Obonyo – TAK-IMPACT Patient Research Partner
Sarayah Brenda Obonyo, MSIM, is a patient advocate living with Takayasu arteritis. She has a Master of Science in Information Management from the University of Washington, where she studied why important information can get missed or lost in healthcare and how that can contribute to delayed diagnosis, especially for people with rare diseases. That work led her to create Signals in the Noise, a patient-centered framework and training guide to help healthcare providers recognize patterns that can lead to diagnostic delay. Her experience living with TAK has shaped her interest in patient advocacy and in ensuring patients’ experiences are part of how we learn about the disease and improve care.
Why I Became a Patient Research Partner
“I became a Patient Research Partner because I live with Takayasu arteritis and understand how much remains unknown about this condition. Since no two individuals experience TAK in the exact same way, learning directly from patients is essential. I joined the TAK-IMPACT study because it captures the reality of living with this disease, including aspects that may not surface during routine clinic visits. I encourage others with TAK to participate, as pooling our shared experiences allows us to build a more comprehensive understanding of the disease.”
Ramya Mohanakrishnan – TAK-IMPACT Patient Research Partner
“In 2017, I partly lost vision in one eye. Doctors threw prednisone at it, I recovered most of my vision back, and everyone went back to their lives. Only, I was left behind with fatigue; fatigue that I blamed on different bits of my life.
Seven years later, in 2024, doctors in India finally diagnosed me with Takayasu’s Arteritis after accidentally discovering aortic inflammation. I had just moved away to a new country. The diagnosis changed my view of the past, my present, and my future.
Two sets of doctors in two different countries are helping me stay alive. Unfortunately, they don’t have all the answers to help me truly live. My lived reality isn’t as simple as the symptoms and side effects sheets. Every moment of my life is based on a series of questions and decisions that are unique to me and my body.
Organizations like the VF and the VPPRN give patients the rare opportunity to voice these realities. Being a part of it allows me to better understand myself and my future. It allows newly diagnosed patients to have more nuanced medical care and well-rounded information. As someone who scrambled for this as a new patient, why wouldn’t I want to help?
If you relate to any of this, please join me in this study. Make yourself heard so you don’t feel like you’re disappearing.”
Alexandra Armstrong – TAK-IMPACT Co-Principal Investigator
“In this study, we want to better understand: What is it like to live with Takayasu Arteritis, and how does it affect your life?
Takayasu Arteritis can affect people in different ways and may impact on everyday life, including physical health, wellbeing and quality of life.
Although we know more about the medical features of Takayasu Arteritis, we know less about what it is like to live with the condition. We want to understand the experiences, concerns and priorities that matter most to people living with Takayasu Arteritis, including their quality of life and life goals, and treatment priorities.
Please consider participating in the TAK-IMPACT study. With your help we can better understand what living with Takayasu Arteritis means and ensure patient’s experiences, priorities and concerns are considered in future research and care.”
Neil Basu, MBChB, FRCP, PhD – TAK-IMPACT Co-Principal Investigator
“I am a Clinician-Scientist who has been inspired and educated by people with vasculitis for over 20 years.
The patient voice is the bedrock of my group’s research activities, and this study seeks to provide a loudspeaker for one of the most overlooked patient groups in medicine.
With your participation in our study, we may be able to provide better ways to treat and manage TAK that are patient-centric, and transform the way in which we manage and treat vasculitis.”
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? Please contact Christine Yeung, the VPPRN Network Manager at christine.yeung@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.