In February 2020, the Relapsing Polychondritis (RP) Foundation announced a generous gift to establish the Penn Relapsing Polychondritis Fund, which will support a unique partnership between the University of Pennsylvania RP Program and the National Institutes of Health (NIH) sponsored Vasculitis Clinical Research Consortium (VCRC).
With support from Race for RP, Nancy Linn, and Neil Langberg, the Penn Relapsing Polychondritis Fund will expand these exceptional programs that will improve care for patients with RP. RP is an understudied, underdiagnosed, and undertreated systemic inflammatory disease that causes the body to attack its own cartilage and can prove fatal if left untreated.
“The absence of any clinical trials or other high-quality clinical research in relapsing polychondritis has greatly hampered advancing therapies and outcomes for patients with this rare disease,” says Peter A. Merkel, MD, MPH, Chief, Division of Rheumatology at the Perelman School of Medicine at the University of Pennsylvania and principal investigator of the VCRC.
“As a patient, I am extremely pleased the Foundation has implemented its plan to support research to advance a cure for relapsing polychondritis,” said Nancy Linn, Chair of the Relapsing Polychondritis Foundation.
“It is especially gratifying to be working with the internationally-recognized center of excellence at the University of Pennsylvania and the world-renowned leaders in the conduct of clinical and translational research.”
– Nancy Linn, Chair of the Relapsing Polychondritis Foundation
“The Penn RP Program represents the RP Foundation’s unwavering commitment to powerful research initiatives that improve patient care and relentlessly advance the path to a cure,” said David Bammert, President of the Relapsing Polychondritis Foundation. “It also provides our philanthropic partners with the unprecedented opportunity to support substantive RP research programs as well as the Foundation’s awareness and educational initiatives.”
The Penn RP Program will allow researchers to pursue important projects, including the development of a world-class referral center to examine the impact of the microbiome on RP disease activity. Eligible patients will be enrolled in a longitudinal study using the existing infrastructure of the VCRC, which is comprised of an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research, with participating centers around the United States and Canada.
At the University of Pennsylvania, patients with RP will have the opportunity to be evaluated by multiple subspecialties in a coordinated patient-centered manner. Along with Dr. Merkel, patient evaluations will be led by Shubhasree Banerjee, MD, a faculty member in the Penn Division of Rheumatology who received prior advanced training in the evaluation and management of RP.
Exciting Penn RP Program Annual Update
Early in 2021 the Penn RP Program will begin enrolling subjects in the Vasculitis Clinical Research Consortium (VCRC) Relapsing Polychondritis Longitudinal Study. This study will enroll patients seen at Penn for their clinical care in a research study that collects detailed information about a patient’s condition (clinical data), blood and urine for future research studies (biospecimens), and other information. The study will provide research scientists with clinical data and biologic material for a wide range of promising projects focusing on better understanding the disease course of RP (clinical outcomes), the genetic links to RP (genomics and epigenetics), and development of tests to help understand how to best treat patients (biomarkers).
As the Penn RP Program grows, so does its potential to conduct research focused on developing new treatments for this complex disease.
The RP Foundation is pleased to support RP research projects like the Penn RP Program that will potentially expedite the discovery of diagnostic tests and novel treatment pathways that improve patient lives.Read More