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 Jason M Springer 1 , Tanaz A Kermani  Jason M Springer 1 , Tanaz A Kermani

 Jason M Springer 1 , Tanaz A Kermani - PowerPoint Presentation

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Uploaded On 2024-02-02

 Jason M Springer 1 , Tanaz A Kermani - PPT Presentation

2 Dianne G Shaw 3 Kalen Larson 3 Cristina Burroughs 4 and Peter A Merkel 5 for the Vasculitis PatientPowered Research Network  1 Vanderbilt University Medical Center Nashville TN USA ID: 1044217

patients reported pan based reported patients based pan cohort diagnosis usa manifestations participants criteria internet involvement 1990 pain angeles

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1. Jason M Springer1, Tanaz A Kermani2, Dianne G Shaw3, Kalen Larson3, Cristina Burroughs4, and Peter A. Merkel5, for the Vasculitis Patient-Powered Research Network 1Vanderbilt University Medical Center, Nashville TN , USA; 2University of California Los Angeles, Los Angeles, CA, USA; 3Vasculitis Foundation, Kansas City, MO , USA; 4University of South Florida, Tampa, FL , USA; 5University of Pennsylvania, Philadelphia, PA , USAOBJECTIVEDescribe an internet-based cohort of participants with a self-reported diagnosis of PAN and determine how many met established criteria for PANDescription of an Internet-Based Cohort with a Self-Reported Diagnosis of Polyarteritis NodosaCONCLUSIONSMETHODSRESULTSInternational cohort with patients from 5 continents (Table 1)Reported manifestations included: joint pains (78%), nerve involvement (86%), muscle pain (86%), rash (76%), weight loss (62%), testicular pain in males (55%), hypertension (36%) and kidney involvement (33%).Only 8% of cohort had isolated skin involvement.The majority of patients reported confirmation of diagnosis by biopsy (76%). (Table 2)Among patients with self-reported PAN:Manifestations are similar to those from center-based cohorts.Most patients meet either the 1990 ACR Classification Criteria or the CHCC definition of PAN.These results support the use of online patient cohorts to conduct research in PAN. ACKNOWLEDGEMENTSThe VPPRN is supported in part by the Vasculitis FoundationProspective, internet-based, longitudinal registry of patients with a self-reported diagnosis of PANData collection: Nov 2014--May 2020All participants completed standardized forms including data on disease manifestations, diagnostic testing, and treatment.Participants who reported a history of a positive test for ANCA (n=19) or hepatitis B (n=2) were excluded.Cases of PAN were evaluated based on the 1990 ACR Classification Criteria and the 2012 CHCC Definition