Vasculitis Patient-Powered Research Network
A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation

The Journey of Patients with Vasculitis from First Symptom to Diagnosis

What did your journey to a diagnosis of vasculitis look like? How long did it take? The V-PPRN research team wants to know about the factors that impacted your journey to a diagnosis of vasculitis.

All forms of vasculitis are rare, and many of the presenting symptoms of vasculitis are similar to those of other, more common diseases. As a result, patients are frequently misdiagnosed and treated for other conditions prior to establishing the correct diagnosis. The rarity of vasculitis, coupled with the wide range of potential symptoms, likely contributes to delays in diagnosis. Early diagnosis can help to minimize the physical and mental impact vasculitis has on patients and potentially reduce costs of healthcare utilization.

Little is known about the typical duration of delay for each type of vasculitis and factors that contribute to the delay in diagnosis.  It is also unclear whether delays in diagnoses vary based on the type of vasculitis, the initial presenting symptoms, or the geographical locality.  This study aims to gain insight into the factors that inhibit a timely diagnosis of vasculitis.

Study Overview

The purpose of this study is to:

  1. Determine the length of time required for patients with vasculitis to be diagnosed.
  2. Compare these times across different types of vasculitis, and
  3. Identify factors associated with time to diagnosis of vasculitis (delayed or fast).

It is anticipated that by examining the factors surrounding the diagnosis of vasculitis, physicians and patients will have a more detailed and sophisticated picture of the disease presentation. This knowledge could lead to earlier diagnosis and treatment, thereby helping to minimize the consequences of the disease.

Aims of the study:

  • Aim 1: To characterize the time from initial symptoms of vasculitis to establishment of a diagnosis of vasculitis, separated by disease type.
  • Aim 2: To identify factors associated with time to diagnosis of vasculitis.
  • Aim 3: To explore the perceived consequences of diagnostic delay from the patients’ perspective.

Who Can Join?

You can participate if you have a diagnosis of vasculitis to include: Behçet’s disease, central nervous system vasculitis, cryoglobulinemic vasculitis, eosinophilic granulomatosis with polyangiitis (Churg-Strauss Syndrome, CSS), giant cell (temporal) arteritis (GCA), granulomatosis with polyangiitis (Wegener's, GPA), IgA vasculitis (Henoch-Schönlein Purpura), microscopic polyangiitis (MPA), polyarteritis nodosa (PAN), Takayasu’s arteritis (TAK), and urticarial vasculitis.

Language requirements: questionnaire will be in English only

To join, you must be a part of the V-PPRN. Click on the Journey study link from your V-PPRN patient portal.

What's Involved?

This is a two-stage survey study. The purpose of the Stage 1 Journey Survey was to solicit your perspective about factors that you believe have contributed to the time to diagnosis of vasculitis whether delayed or fast. The Stage 1 Journey Survey is complete, and the responses from the survey helped to guide the questions and design of the Stage 2 Journey Survey.

The Stage 2 Survey is now open! Here is how to participate in the second survey:

  • Click on the Journey study link from your V-PPRN patient portal.
  • Fill out the survey!
  • It is that easy! Participate today

Join the V-PPRN and become a vasculitis visionary! Get Started