An observational study to assess real-world patient characteristics and clinical course of disease in participants with PKP2-ACM.
SNAPSHOT-PKP2 is an observational, multicenter study that consists of 2 parts, a retrospective EMR review (up to 2 years) and a prospective observational study (1 year), to evaluate the clinical burden of illness of patients with PKP2-ACM, and to prospectively evaluate changes in key cardiac parameters and patient-reported outcome measures (PROMs) associated with PKP2-ACM progression.
Study Type
OBSERVATIONAL
Enrollment
40
Leland Stanford Junior University
Redwood City, California, United States
RECRUITINGJohns Hopkins University
Baltimore, Maryland, United States
RECRUITINGNorthshore University Healthsystem Research Institute
Columbia, Maryland, United States
Premature ventricular contractions (PVC)
Change from baseline
Time frame: 12 months
Ventricular arrhythmias and associated clinical events
Change from baseline by interrogation of implanted cardioverter defibrillator and remote cardiac monitoring
Time frame: 12 months
ECG parameters
Change from baseline
Time frame: 12 months
Cardiac structure and function
Change from baseline via cardiac MRI and echocardiogram
Time frame: 12 months
Patient reported outcomes
Patients' Global Impression of Change (PGIC) scale, measuring participant perception of change from baseline.
Time frame: 12 months
Patient reported outcomes
Patients' Global Impression of Severity (PGIS) scale, measuring patient perception of disease progression.
Time frame: 12 months
Cardiac Biomarkers
Change from baseline
Time frame: 12 months
Health resource utilization
Number of ED, urgent care and outpatient visits, and hospitalizations
Time frame: 12 months
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University of Michigan
Ann Arbor, Michigan, United States
RECRUITINGHenry Ford Hospital
Detroit, Michigan, United States
RECRUITINGUniversity of Rochester
Rochester, New York, United States
RECRUITING