Cardiovascular Genetics Research Nurse for Pegasus Study on Natural History of Arrhythmogenic Cardiomyopathy
The Research Nurse will provide specialized clinical and research support for a longitudinal
natural history study investigating PKP2-associated arrhythmogenic cardiomyopathy (ARVC). This individual will coordinate and execute study-related activities involving patient recruitment, clinical assessments, biospecimen collection, data management, and follow-up, in accordance with Good Clinical Practice (GCP) and institutional regulatory requirements.
The incumbent will serve as a key member of a
multidisciplinary research team including cardiologists, geneticists, imaging specialists, research coordinators, and nurse practitioners, but this position will be focused exclusively on this project.
Key ResponsibilitiesClinical and Research Coordination-
Coordinates the recruitment, screening, consent, and enrollment of eligible participants into the natural history study.
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Oversees scheduling and execution of research visits, including ECGs, cardiac imaging, blood draws, exercise testing, cardiac imaging and blood sample collection. Patients over 18 may elect to undergo a right heart catheter and myocardial biopsy.
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Conducts structured interviews and standardized questionnaires to capture detailed medical and family histories.
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Ensures the timely completion of study case report forms and source documentation in compliance with institutional and sponsor guidelines.
Nursing and Patient Care-
Performs study-related clinical assessments and procedures within scope of nursing practice (e.g., vital signs, ECG acquisition, specimen handling).
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Monitors participant safety and well-being throughout study activities; promptly reports and documents adverse events.
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Provides education to participants and families regarding study procedures, follow-up requirements, and genetic counseling resources.
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Maintains strict adherence to institutional infection control, patient confidentiality, and research safety standards.
Data and Regulatory Compliance-
Maintains study documentation and research records in accordance with institutional policy, sponsor requirements, and federal regulations (IRB, FDA, HIPAA).
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Participates in internal audits, data quality reviews, and monitoring visits.
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Supports the preparation of regulatory submissions, amendments, and annual reports.
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Collaborates with the research and biostatistics teams to ensure data completeness and integrity.
Collaboration and Communication-
Serves as a central point of contact for study participants, investigators, referring clinicians, and external collaborators.
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Participates in team meetings, case reviews, and protocol development discussions.
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Contributes to manuscripts, abstracts, and presentations summarizing study findings as appropriate.
Minimum QualificationsEducation:-
Bachelor’s degree in nursing (BSN) required; Master’s Degree (MSN) preferred.
Experience:-
Minimum of two to three years of relevant clinical or research nursing experience, preferably in cardiology or inherited disease research.
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Demonstrated knowledge of Good Clinical Practice (GCP), research ethics, and IRB processes.
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Proficiency in medical record systems (e.g., Epic) and electronic data capture tools (e.g., REDCap).
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Experience working in cardiovascular genetics or inherited arrhythmia syndromes (e.g., ARVC, HCM, LQTS).
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Familiarity with natural history or registry-based clinical studies.
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Prior experience coordinating NIH- or industry-sponsored research.
License/certifications:-
MA RN license required.
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BLS certification and CITI training.
Please note: During a public health emergency, individuals in this role may be expected to take on additional duties to respond to organizational needs.