Vasculitis Patient-Powered Research Network
A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation

Who We Are

We are 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.

Mission

The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.

The goal of the V-PPRN 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.

Vision

 

 Our vision is to improve the health of vasculitis patients by developing early-diagnosis methods, discovering more effective treatments, and finding cures. We are inviting thousands of patients with vasculitis, and caregivers, to come together to learn more about symptoms, share experiences, and to become a part of a research network to improve lives.

It is a whole new way of finding answers for the questions most important to YOU and other patients living with vasculitis.

 

The V-PPRN is poised to:

  • Drive new vasculitis clinical research studies
  • Engage patients in new ways:
    • Directly involve patients in the design and selection of research topics
    • Significantly increase the number of patients eligible to participate
    • Enroll a geographically diverse patient population
    • Broaden the disease spectrum by enrolling patients with many different types of vasculitis
       

What is the strength of the V-PPRN?

circles

Builds on a strong foundation. The V-PPRN builds upon the VCRC's stellar reputation for conducting high-quality vasculitis research, by expanding the role of patient engagement and the data collected.

patients

Patient-Powered. Patients participate as full partners in the work of the V-PPRN—from generating a research idea to the summary of results and all the steps in between. 

Research We Hope to Conduct

The Network is poised to conduct a wide range of clinical research from simple online surveys to large scale randomized clinical trials. As vasculitis visionaries, the V-PPRN has a large collection of research proposals all generated in collaboration with patient-partners. The proposed research ideas are based on four essential criteria:

 

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Importance to patients

Patients will help select the top research ideas that that V-PPRN will pursue.

 
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Scientific Merit

Whether or not a study represents good science.

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Feasibility within the V-PPRN

The V-PPRN will decide if it has the clinical resources needed to perform the study.

 

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Fundability

Likelihood that a study will receive financial support.

A Partnership of the Vasculitis Clinical Research Consortium & the Vasculitis Foundation

The Vasculitis Patient-Powered Research Network (V-PPRN) is the product of a more than 10-year joint effort among:

  1. Patients living with vasculitis
  2. Patient advocacy organizations
  3. University clinical investigators
  4. Data analysis experts
  5. Funding organizations

We are all dedicated to conducting  clinical research in vasculitis aimed at addressing key scientific and clinical issues that are a high-priority to both patients and physicians.

Vasculitis Foundation (VF)

Vasculitis Foundation (VF)

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the health care professionals who care for them. The Vasculitis Foundation advocates for early diagnosis and leading edge treatment for all patients, no matter where they live. The Vasculitis Foundation is the largest private funder of research on vasculitis and collaborates with researchers around the world to fund the most promising studies. The program is guided by the VF Scientific Advisory Board which reviews, critiques and ranks the applications and provides guidance to the VF Board of Directors on the selection of studies to fund.

www.vasculitisfoundation.org

Vasculitis Clinical Research Consortium (VCRC)

Vasculitis Clinical Research Consortium (VCRC)

The Vasculitis Clinical Research Consortium (VCRC) is a founding member of the Rare Diseases Clinical Research Network (RDCRN) and is the major clinical research infrastructure in North America for the study of vasculitis.

VCRC projects include clinical trials, outcome measures development, large cohort and clinical epidemiologic studies, specimen collection and repository, translational investigations including biomarker discovery and genomics. An integral part of the VCRC is the partnership with the VF and patient members attend conference calls, Steering Committee meetings, and take active and important roles in research planning and implementation. The VCRC includes 17 vasculitis centers in the US and Canada and dozens more partner sites in the US, Europe, Asia, and Australia. The VCRC has substantial funding from the National Institutes of Health, (NIAMS, NHLBI), PCORI, FDA, foundations, and industry partners.

www.RDCRN.org/VCRC

Funded by: Patient-Centered Outcomes Research Institute (PCORI)

PCORI

PCORI is authorized by Congress to fund and disseminate research that will provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI's research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.

www.pcori.org

Our Team

Meet the researchers, patient advocates, and patient-partners dedicated to building the V-PPRN and improving the lives of patients with vasculitis.

George

George Casey, MBA, Co-Principal Investigator
Vice President, Vasculitis Foundation

Mr. Casey is a proven leader, business executive, and technology evangelist. He is also a patient, diagnosed with granulomatosis with polyangiitis (Wegener's, GPA). He has a Bachelor's Degree in Information Systems from the University of Illinois, and a MBA from the Kellogg School of Management at Northwestern University. He has served on the Board of Directors of the Vasculitis Foundation as the Vice President of Resource Development and Treasurer since 2011.

Mr. Casey strongly believes the combination of patient perspective he has gained since diagnosis, along with his expert level knowledge of databases, data driven decision models and cloud integration techniques makes him an exceptional contributor to the investigative team for this exciting project.

Peter

Peter A. Merkel, MD, MPH, Co-Principal Investigator
Principal Investigator of the Vasculitis Clinical Research Consortium, University of Pennsylvania School of Medicine

Dr. Merkel, a rheumatologist, is the Principal Investigator of the Vasculitis Clinical Research Consortium. He is a Professor of Medicine and Epidemiology and Chief of the Division of Rheumatology at the University Of Pennsylvania School Of Medicine.

Dr. Merkel received his medical degree from Yale University School of Medicine and performed his residency at the Hospital of the University of Pennsylvania. He earned his Masters of Public Health at Harvard School of Public Health. He was a clinical and research fellow in Rheumatology at Massachusetts General Hospital and has been a member of the faculty at Harvard Medical School, Boston University School of Medicine, and now the University of Pennsylvania School of Medicine.

Dr. Merkel is an internationally recognized leader in clinical research and care in vasculitis and is the Principal Investigator on multiple NIH, FDA, and PCORI research grants that focus on clinical and translation investigation in vasculitis.

Investigators

Tony

Antoine Sreih, MD
Assistant Professor of Clinical Medicine at the University of Pennsylvania, V-PPRN Investigator

I'm in because of my passion for vasculitis and my belief in the critical role of patients in research as well as the solid partnership between patients and investigators to understand better vasculitis and advance our knowledge towards finding a cure.

Jeff

Jeffrey Krischer, PhD
Principal Investigator of the Rare Diseases Clinical Research Network (RDCRN) Data Management and Coordinating Center (DMCC), University of South Florida, V-PPRN Investigator

I'm in because I believe that investigators and patients alike are partners in helping discover new approaches to improving the lives of affected individuals. I am proud to be a member of this partnership.

Peter

Peter C. Grayson, MD, MSc
Principal Investigator, Vasculitis Translational Research Program National Institutes of Health / National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), V-PPRN Investigator

I'm in because I have an interest in patient-driven clinical research and in the development of novel methods to improve vasculitis research.

I am a physician-scientist at the National Institutes of Health who focuses exclusively on vasculitis from both a clinical and research perspective.

Tanaz

Tanaz A. Kermani, MD, MS
Assistant Clinical Professor, V-PPRN PRODUCT Work Group Member, V-PPRN Investigator

I'm in because as a vasculitis specialist I realize there is an unmet need to incorporate our patient's perspectives and experiences into clinical care and studies. V-PPRN will empower our patients and advance our understanding of vasculitis by including aspects that are important to them.

Patient Partners

April

April
V-PPRN Patient-Partner

I am in because I want others to benefit from my experiences without having to go through the same struggles and frustrations I faced when I first started getting sick.

Carol

Carol
V-PPRN Patient-Partner

I am in because I have Takayasu's arteritis and because I was a preclinical researcher at the National Institutes of Health. I hope the contributions of my personal health experiences and my professional training can provide insights that help inform vasculitis research by this network.

Celeste

Celeste
V-PPRN Patient-Partner

I am in because having been diagnosed with GPA/WG at the age of 17 in 1982. I was saved by clinical research being done by Dr. Anthony Fauci at the NIH. Research is how we are going to eradicate autoimmune diseases like vasculitis! So I can't be in too many times or ways!

Christine

Christine
V-PPRN Patient-Partner

I'm in because the onset of my vasculitis has changed my life, and forced me to modify my goals. I have extreme fatigue and painful joints, although I am in remission. I can no longer work, particularly in my field. Consequently, I want to contribute to research that is performed to evaluate and develop treatments for vasculitis.

Denise

Denise
V-PPRN Patient-Partner

I'm in because I want to contribute to the intergenerational vasculitis community's efforts to help current and future vasculitis patients and their families.

Dianne

Dianne
V-PPRN Patient Partner

I'm in because only through research will vasculitis patients have improved resources, more tailored therapies and a better quality of life. This new partnership is the best way to achieve these goals.

Ed

Ed
V-PPRN Patient Partner

I'm in becauseI'm in because as the director of a patient advocacy organization, I know that vasculitis patients are dependent on research. And, researchers are dependent on patients to conduct these studies. The V-PPRN is the solution to helping these two groups work together.

Ida

Ida
V-PPRN Patient Partner

I'm in it because my family has been impacted by vasculitis. Because these diseases are rare, it's important to provide medical researchers with patient data that may contribute to the development of new treatment approaches utilizing biomarkers and the latest translational research.

J. Pablo

J. Pablo
V-PPRN Patient-Partner

I've joined the V-PPRN as a vasculitis patient who feels that vasculitis research is enhanced by providing a patient's perspective into the problems that matter most to the patient. A patient's insights, in concert with a researcher's objective evaluation will ultimately help cure vasculitis.

Jim

Jim
V-PPRN Patient-Partner

I'm in because I recently retired from a satisfying job in clinical research, so I was happy to be invited to participate in the V-PPRN as a Patient Partner. I hope to make some meaningful contributions with my personal medical experiences and professional skills.

Kristen

Kristen
V-PPRN Patient-Partner

I'm in because I am a vasculitis patient and I want to help bring awareness to this disease. I believe the research conducted through this patient-powered network will provide valuable information to help vasculitis patients get the best care possible.

Manny

Manny
V-PPRN Patient-Partner

I'm in because I want to help create a new vision for vasculitis research by sharing my experiences and medical history with researchers. The future is what we make it, and I intend to do my part to help make the future brighter for all patients with vasculitis diseases.

Marianne

Marianne
V-PPRN Patient-Partner

I'm in because I believe that patients like myself add power to research by offering the new dimension of everyday reported outcomes and medical data. This initiative and collaboration with investigators will help to accelerate the pace of vasculitis research.

Michael

Michael
V-PPRN Patient-Partner

I'm in because I want to make a notable contribution to vasculitis research of all sorts. I want to make an impact with the time I have left.

Nita

Nita
V-PPRN Patient-Partner

I am in because as a vasculitis patient, I am grateful for the opportunity to contribute to research that will help doctors help us.

Paul

Paul
V-PPRN Patient-Partner

I am in because I believe it is important for all of us in the vasculitis community (patients, researchers, care providers, family, and friends) to team together to share our talents and knowledge so that we can continue to move forward in the fight against vasculitis.

Shane

Shane
V-PPRN Patient-Partner

I'm in because I live with vasculitis, I breathe with vasculitis, I am vasculitis. I am in because vasculitis research may not create an easy life, but provide the strength to endure a difficult one.

Sharon

Sharon
V-PPRN Patient-Partner

I am in because I am a Vasculitis patient, and I believe my experience with this disease, can help researchers gather more experiences on how to treat and possibly cure this condition in the future.

Stephanie

Stephanie
V-PPRN Patient-Partner

I'm in because I believe in V-PPRN research. 

With 30+ years experience in health information management, my background involves implementation of electronic record and privacy of health information.

I know that information I share with V-PPRN will be properly protected.

Trish

Trish
V-PPRN Patient-Partner

I'm in because I am a cryoglobulinemia vasculitis patient, and I believe and hope my experience with the disease, combined with the experience of other vasculitis patients, will help medical researchers unlock the mysteries of vasculitis and help its patients.

Staff

Carol

Carol A. McAlear, MA
Project Manager, V-PPRN Staff

I'm in because involving a network of patients in the design and selection of research can only improve on and enhance vasculitis research.

Cristina

Cristina Burroughs
Data Manager, V-PPRN Staff

I'm in because I have been touched by stories from patients and family members affected by vasculitis and I want to be part of the solution to help patients living with these challenging diseases. I'm proud to be a part of the V-PPRN where we include patients in the research process to help address the health challenges they face on a daily basis.

Joyce

Joyce Kullman
Executive Director Vasculitis Foundation, V-PPRN Staff

I'm in because every day I work with patients who are fighting to get better and who have questions that we can't answer. I'm in because we need to better understand vasculitis and its impact on our patients and their families. I believe this is a team effort and requires every member of the vasculitis community - patients, family members, physicians and researchers - to work together to solve the vasculitis puzzle.

Kalen

Kalen Young, MA
Network Manager, V-PPRN Staff

I'm in because I believe in the V-PPRN mission and the capabilities of our Network. Research about disease prevention and treatment needs to be relevant to patients in order to achieve maximum benefit. We are achieving this by having patients as partners in all aspects of research development with the V-PPRN.

Matthew

Matthew C. MacDonald, MSEd
Clinical Research Manager, V-PPRN Staff

I'm in because my experience has taught me that the more patients are involved in research from the beginning, the more successful that research is! The Vasculitis Patient-Powered Research Network will ensure the success of vasculitis research in the future and that the questions asked are those most meaningful to patients.

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