# VCRC Longitudinal Study

> **NIH NIH U54** · UNIVERSITY OF PENNSYLVANIA · 2020 · $64,450

## Abstract

Project Summary/Abstract
The systemic vasculitides are a group of rare diseases characterized by severe inflammation of blood vessels
leading to arterial stenosis or occlusion, and organ damage or death if untreated. With aggressive
immunosuppressive treatment, most patients survive, but subsequent disease course is variable, relapse is
common, and long-term morbidity from vasculitis or its treatment is expected. Long-term longitudinal studies
are needed to inform and guide clinicians in this era of adequate but imperfect management. There are also
significant unmet needs for i) biomarkers of disease activity, risk of relapse, and long-term damage; ii) genetic
epidemiology studies to provide insight into pathogenesis and ideas for therapeutics; iii) early-phase clinical
trials of novel therapeutics; iv) novel methods to conduct high-quality clinical trials and clinical research studies
in these rare diseases; and v) for improved outcome measures, including patient-reported outcomes. The
Vasculitis Clinical Research Consortium (VCRC) Longitudinal Study address all these unmet needs through
the multiple research studies associated with this protocol.
We propose to continue conducing the VCRC Longitudinal Study to study nine vasculitides: giant cell arteritis,
Takayasu's arteritis, polyarteritis nodosa, granulomatosis with polyangiitis, microscopic polyangiitis,
eosinophilic granulomatosis with polyangiitis, idiopathic aortitis, central nervous system vasculitis, and
relapsing polychondritis at leading referral centers internationally. The Longitudinal Study provides data and
samples to the VCRC Clinical Data, Biospecimen, and Tissue Repositories. The VCRC makes all of our data
and specimens available to any investigator seeking to conduct scientifically valid research that will advance
our understanding of vasculitis.
The Longitudinal Study has been remarkably successful and scientifically productive. More than 2000 patients
have been enrolled and more that 75 projects launched related to the data and specimens generated in the
Longitudinal Study.
The VCRC Longitudinal Study is a remarkable and unique resource that provides the means to study a group
of rare diseases in a comprehensive, prospective, standardized manner and produce data and linked biologic
material unprecedented and otherwise unavailable in the field of clinical research in vasculitis. The
Longitudinal Study runs smoothly within the Rare Diseases Clinical Research Network and is synergistic and
vital to other operations and studies of the Consortium. The U54 grant provides vital support for the
Longitudinal Study that in turn provides opportunities for clinician scientists throughout the world.

## Key facts

- **NIH application ID:** 10025571
- **Project number:** 5U54AR057319-18
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** Peter A Merkel
- **Activity code:** U54 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $64,450
- **Award type:** 5
- **Project period:** 2003-09-30 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10025571

## Citation

> US National Institutes of Health, RePORTER application 10025571, VCRC Longitudinal Study (5U54AR057319-18). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10025571. Licensed CC0.

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