Journey of Patients With Vasculitis From First Symptom to Diagnosis

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Brief Title

Journey of Patients With Vasculitis From First Symptom to Diagnosis

Official Title

The Journey of Patients With Vasculitis From First Symptom to Diagnosis

Brief Summary

      This study seeks to understand the journey that patients eventually are diagnosed with
      vasculitis experience in the period prior to their formal diagnosis by a healthcare provider.
      Data elements of interest include average time from the onset of the first symptoms to the
      time a diagnosis of vasculitis is confirmed. Other aims include identifying factors
      associated with the time to diagnosis. These factors will be divided into: a) intrinsic
      factors, or so-called "patient-related factors", such as the type of vasculitis symptoms,
      patient demographics, socioeconomic status, patients' beliefs regarding the etiology of their
      symptoms, and other factors, and b) extrinsic factors, or "professional/health system
      factors", such as healthcare access, referral patterns, testing patterns, and other factors.
      Understanding such factors can guide future efforts to shorten delays in diagnosis and
      thereby improve outcomes. All analyses will be done for the population of patients with
      vasculitis as a whole and by individual types of vasculitis.
    



Study Type

Observational [Patient Registry]


Primary Outcome

Percentages of patients with different types of vasculitis who report a delay in their disease diagnosis from initial symptoms of vasculitis to establishment of a diagnosis of vasculitis, stratified by disease type.


Condition

Vasculitis

Intervention

Online Questionnaire

Study Arms / Comparison Groups

 Group 1
Description:  The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.

Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Other

Estimated Enrollment

456

Start Date

January 11, 2018

Completion Date

May 21, 2018

Primary Completion Date

May 21, 2018

Eligibility Criteria

        Inclusion Criteria:

          1. Diagnosis of a systemic vasculitis: The V-PPRN includes patients with self-reported
             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.

          2. Language requirements: questionnaire will be in English only

        Exclusion Criteria:

          1. Inability to provide informed consent and complete survey in English

          2. Patients with a diagnosis of "other" type of vasculitis

          3. Patients with a "missing" diagnosis -
      

Gender

All

Ages

N/A - N/A

Accepts Healthy Volunteers

No

Contacts

Antoine Sreih, MD, , 

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT03410290

Organization ID

VCRC5538/V-PPRN4


Responsible Party

Principal Investigator

Study Sponsor

University of Pennsylvania


Study Sponsor

Antoine Sreih, MD, Study Chair, University of Pennsylvania


Verification Date

June 2018