VPPRN Open Studies

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Have you joined the VPPRN?

The VPPRN promotes the advancement of research that provides reliable, useful, and meaningful information to patients with vasculitis and their clinicians.

We maintain an online research registry of patients with all forms of vasculitis providing clinical data about their condition.  The type of information collected through the VPPRN portal includes:

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VPPRN Study Characteristics

To uphold a standard of scientific excellence that aligns with our commitment to patient‐centered research, a VPPRN study must possess ALL the following characteristics:

  1. Asks a research question that is important to people affected by vasculitis (patient‐centered)
    • VPPRN studies must be scientifically meaningful as well as relevant and important to people affected by vasculitis.
  2. Includes significant patient engagement in all aspects of the research
    • “Patient engagement” refers to patients having meaningful participation throughout the research process, from topic selection to design, and conduct, and reporting of research.
  3. Utilizes VPPRN infrastructure and resources
    • For a study to be considered a VPPRN study, it must use one or more VPPRN resources, including:
      • Data from the VPPRN patient registry and/or another component of PCORnet
      • Access to patients identified from the VPPRN patient registry

[/vc_column_text][vc_column_text]The VPPRN has successfully performed a wide range of clinical research and is poised to conduct research studies from simple online surveys to large-scale randomized clinical trials.  As vasculitis visionaries, the VPPRN has a large collection of research proposals all generated in collaboration with patient-partners.  The proposed research ideas are based on four essential criteria:

  1. Scientific merit
  2. Importance to patients
  3. Feasibility within the VPPRN
  4. Fundability

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Open Studies 

Learn about the open VPPRN studies and how you can participate.

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VCRC-VPPRN EGPA Registry

Goal: To conduct clinical research and clinical trials to learn more about EGPA with the goal of improving management and treatment of this complex disease.

Who Can Participate? Any patient with a diagnosis of EGPA.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fresearch%2Fvpprn%2Fvpprn-open-studies%2Fvpprn-egpa-registry%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629574156732{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

Vasculitis Pregnancy Registry (VPREG)

Goal: The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis.

Who Can Participate? Patients who are currently pregnant and over 18 years of age.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fvpreg%2F”][/vc_column][/vc_row][vc_row][vc_column][vc_column_text css=”.vc_custom_1629499956967{padding-top: 10px !important;padding-bottom: 25px !important;background-image: url(https://vasc.avallohosting.com/wp-content/uploads/2020/08/VPPRN-study-banner-FINAL-144ppi-copy-1-scaled.jpg?id=1776188) !important;border-radius: 10px !important;}”]

Closed Studies In Analysis 

These VPPRN studies are currently closed for enrollment. The data from these studies is currently under analysis.

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Sleep-Vasc: Quality of Sleep in Vasculitis

Goal: Through this study, we hope to learn more about the quality of sleep of patients living with vasculitis.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fresearch%2Fvpprn%2Fvpprn-open-studies%2Fsleep-vasc%2F|target:_blank”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629574125726{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

VascStrength (VascStrong)

Goal:  To describe the prevalence of common health conditions associated with frailty in patients living with vasculitis and describe its impact on health-related quality of life and clinical outcomes.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fresearch%2Fvpprn%2Fvpprn-open-studies%2Fvascstrong_study%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629497098989{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

OPTIONS: Options and Preferences for Treatments Informing recOmmendatioNS

Goal: To better understand patients’ values and preferences about plasma exchange in ANCA associated vasculitis.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fvpprn-options-study%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629497098989{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

VascSkin: Skin Vasculitis Quality of Life Survey

Goal: To better understand the impact of vasculitis-related skin involvement on patients’ quality of life.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fvascskin_new%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629574237268{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

AAV Response Criteria Delphi

Goal: To measure which measures, tools, or outcomes are considered by patients to be important when assessing treatment response in AAV.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fresearch%2Fvpprn%2Fvpprn-open-studies%2Faavdelphi%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629574301000{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

Vasculitis Covid-19 Patient Project

Goal: To better understand coronavirus concerns of patients with vasculitis and track respiratory illnesses across the United States and Canada.

Study is closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fvasculitis-covid-19-patient-project-incredible-response-the-launch%2F”][/vc_column][/vc_row][vc_row css=”.vc_custom_1629497098989{margin-right: 0px !important;margin-bottom: 35px !important;margin-left: 0px !important;border-top-width: 2px !important;border-right-width: 2px !important;border-bottom-width: 2px !important;border-left-width: 2px !important;padding-right: 15px !important;padding-left: 15px !important;border-left-color: #412f8c !important;border-left-style: solid !important;border-right-color: #412f8c !important;border-right-style: solid !important;border-top-color: #412f8c !important;border-top-style: solid !important;border-bottom-color: #412f8c !important;border-bottom-style: solid !important;border-radius: 10px !important;}”][vc_column][vc_column_text]

Vasculitis Diagnostic Validation Study

Goal: To explore novel methods to provide a feasible approach to diagnostic confirmation for use in future patient-reported registries like the VPPRN.

Study is now closed and under analysis.[/vc_column_text][vc_btn title=”LEARN MORE” color=”VPPRNDarkPurple” size=”lg” link=”url:https%3A%2F%2Fvasc.avallohosting.com%2Fvpprn-diagnosticvalidation%2F”][/vc_column][/vc_row][vc_row full_width=”stretch_row” css=”.vc_custom_1598631427555{margin-bottom: 35px !important;background-image: url(https://vasc.avallohosting.com/wp-content/uploads/2020/08/background2.jpg?id=1776700) !important;}”][vc_column][vc_column_text]

Are you a member of the VPPRN?

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.

Learn About Our Research Discoveries

Learn more about the research conducted by the VPPRN on our Research Discoveries page.

Questions?

Please note, 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 christine.yeung@pennmedicine.upenn.edu if you have questions about the study.

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