The Vasculitis Foundation is pleased to announce that a team with representatives from the VF has been awarded a grant to establish the Vasculitis Patient Powered Research Network (V-PPRN). The V-PPRN is comprised of the Vasculitis Foundation, the umbrella patient advocacy group in the US, the Vasculitis Clinical Research Consortium (VCRC) which represents virtually every major center for clinical investigation in vasculitis in the United States and Canada (and a significant international community of investigators), and experts in constructing federated databases including the electronic health record (EHR), disease-specific health data and patient-reported outcomes. These groups have worked together for more than a decade with a common mission of improving the lives of those affected with vasculitis.
The V-PPRN is the product of a more than 10-year productive collaboration among patients, patient advocacy organizations, academic clinical investigators, expert clinicians, biomedical informaticians, qualitative and quantitative methodologists, and funding organizations all dedicated to conducting high-quality clinical research in vasculitis aimed at addressing key scientific and clinical issues considered of high priority to both patients and physicians. We will expand the role of patients such that they are fully involved and direct network governance; demonstrate that we will have patient-reported data collected for at least 80% of the cohort; build upon our extensive experience and expertise in incorporating data standards suitable for sharing; leverage our established infrastructure, resources, and positive and productive relationships among stakeholders; and evolve and transform the V-PPRN into a model PPRN within the overall National Patient-Centered Clinical Research Network.
Part of the $1 million award will result in direct funding to the VF to support such activities and patient engagement and communication. Utilizing the resources provided by a PCORI award and the National Patient-Centered Clinical Research Network, the V-PPRN is poised to increase our membership/patient representation, expand data access and availability, and address disease-specific outcomes. The V-PPRN will be a vibrant, flexible, sustainable patient community ready and committed to participating in clinical research through the sharing of electronic medical records to address important issues facing patients and providers.
PCORI was authorized by the Patient Protection and Affordable Care Act of 2010 as a non-profit, nongovernmental organization and is charged with helping patients, clinicians, purchasers, and policy makers to make better-informed health decisions by “advancing the quality and relevance of evidence about how to prevent, diagnose, treat, monitor, and manage diseases, disorders, and other health conditions.” It does this by producing and promoting high-integrity, evidence-based information that comes from research guided by patients caregivers, and the broader healthcare community.
The research team is led by Peter A. Merkel, MD, MPH at the University of Pennsylvania Vasculitis Center and Director of the VCRC and George Casey, MBA, VF Board Member. The team is also comprised of other medical professionals, researchers, patients, and patient advocates.
In the next few weeks, we will be calling for applicants to participate on the various cross-functional teams as outlined in the chart below. This network is about patients and it’s a critical tenet of our approach to include patient feedback and governance throughout the process. More details to follow via the VF website and social media outlets such as Facebook and LinkedIn, but if you would like to be considered, please feel free to send an email to George Casey, Vice President of VF Resource Development.