Join us this fall for our inaugural edition of Building Outcomes, Leading Discoveries (V-BOLD) webinars. We’ll bring together leading experts to explore each of the areas of interest and discuss the possibilities going forward. This is an opportunity for you, the donor, to ask questions and become a participant in future outcomes and discoveries.
To register, email [email protected] or call 816.436.8211.
Vasculitis-Building Outcomes, Leading Discoveries (V-BOLD)
Today, the mission of the Vasculitis Foundation (VF) still rings true. “Building upon the collective strength of the vasculitis community, the Foundation supports, inspires, and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and awareness initiatives.”
Vasculitis-Building Outcomes, Leading Discoveries (V-BOLD) is one such initiative that builds on that collective strength as it combines three programs within the scope of VF support: The Vasculitis Clinical Research Consortium (VCRC)-VF Fellowship Program, the development of vasculitis clinics, and the Vasculitis Patient-Powered Research Network (VPPRN).
September 28, 2021, 7:00 p.m. Eastern
October 26, 2021, 7:00 p.m. Eastern
November 30, 2021, 7:00 p.m. Eastern
Email [email protected] for more information or to register.
Vasculitis Clinical Research Consortium-Vasculitis Foundation (VCRC-VF) Fellowship Program
The VCRC-VF Fellowship is a mentored training program of up to two years for physician-investigators who have a strong interest in vasculitis and wish to pursue a period of specialized training with an emphasis on clinical and/or translational patient-oriented research.
Goals of the Fellowship
The two principal goals of the VCRC-VF Fellowship are:
- for the fellows to be involved in the care of enough patients with various forms of vasculitis to develop expertise and gain experience in the diagnosis and management of patients.
- to familiarize the fellows with the major unmet research needs, investigative techniques used in clinical and translational research, and to understand how to conduct high-quality research in vasculitis.
VCRC-VF Fellowship Background
Expanding our Reach
The VCRC is an integrated group of academic medical centers, patient support organizations, and resources dedicated to conducting clinical research in different forms of vasculitis. The VF has partnered with the VCRC since its creation in 2002 to encourage and recruit patients with vasculitis to participate in research and to connect researchers with patients.
Since 2005, the VCRC-VF Fellowship Program has trained 19 fellows from the US, Canada, Chile, France, Iceland and Italy.
Vasculitis Patient-Powered Research Network (VPPRN)
The VPPRN is the result of more than 10 years of productive collaboration among patients, patient advocacy organizations, clinical physicians and investigators, biomedical informaticians, qualitative and quantitative methodologists, and funding organizations. Dedicated to conducting high-quality clinical research in vasculitis, our aim is to address key, scientific and clinical issues important for both patients and their physicians.
Our mission is to improve the understanding, diagnosis, and treatment of vasculitis through the active engagement of patients with vasculitis, their caregivers, researchers, and healthcare providers in a network that facilitates patient-centered research.
Building on a Strong Foundation
The VPPRN builds upon the collaboration of the VF and the Vasculitis Clinical Research Consortium (VCRC), which includes major centers for clinical investigation in the US and Canada, with an extensive international community of investigators.
The VPPRN is a research network that inspires, plans, and conducts new vasculitis clinical research studies. The VPPRN has the capacity to:
- Drive new vasculitis clinical research studies
- Promote novel engagement of patients
- Expand patient involvement in the design and selection of research topics
- Increase the number of patients eligible to participate
- Recruit geographically-diverse patient populations
- Represent the broad disease spectrum of patients with vasculitis
Dedicated vasculitis centers are essential in the patient journey from diagnosis to treatment to remission, with the potential for cures.
Goals of the Vasculitis Centers
- to provide patients with vasculitis the proper diagnosis and treatment options that are tailored to each patient’s specific needs.
- to meet the critical need to be proactive in treating and managing vasculitis, since early treatment may lead to a more positive outcome.
Vasculitis Centers Background
Disease Diagnosis and Management is Critical
It is only through accurate disease diagnosis and treatment that better health outcomes are achieved for patients with vasculitis. Vasculitis centers are dedicated to improving the lives of people with vasculitis through disease management, research, and education.
Vasculitis centers provide comprehensive, high-quality, and compassionate care to patients with vasculitis. In addition, they have the capacity to advance our understanding of vasculitis through research. With experts in the management and study of the disease, vasculitis centers are at the forefront of specialty care and clinical research, while treating all types of vasculitis.
Each of these programs stands on its own individually; however, the three are truly connected through the V-BOLD Initiative:
- The VCRC-VF Fellowship Program provides training to physicians in vasculitis, helping to build a pipeline of expertise to treat patients in a broader geographical area. In turn, VCRC-VF fellows tap into the VPPRN for research projects.
- Vasculitis clinics give medical residents and fellows the opportunity to learn how to care for vasculitis patients.
- Patients treated at vasculitis clinics participate in research through the VPPRN, which collects data from patient-reported outcomes tobetter understand vasculitis, and learn how to combat these diseases.
What do patients with vasculitis need?
- Healthcare professionals who understand how to care for a patient with vasculitis
- Access to medical centers that specialize in vasculitis
- More research into vasculitis that incorporates the patient perspective
If you’d like a copy of the V-BOLD program PDF to save or distribute, please click here.