Boston Children’s Hospital
Registered Nurse, Cardiovascular Genetics Research Nurse
Boston Children’s Hospital, Boston, Massachusetts, us, 02298
Position Summary
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 Responsibilities Clinical and Research Coordination
Coordinates the recruitment, screening, consent, and enrollment of eligible participants into the natural history study.
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.
Conducts structured interviews and standardized questionnaires to capture detailed medical and family histories.
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).
Monitors participant safety and well-being throughout study activities; promptly reports and documents adverse events.
Provides education to participants and families regarding study procedures, follow-up requirements, and genetic counseling resources.
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).
Participates in internal audits, data quality reviews, and monitoring visits.
Supports the preparation of regulatory submissions, amendments, and annual reports.
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.
Participates in team meetings, case reviews, and protocol development discussions.
Contributes to manuscripts, abstracts, and presentations summarizing study findings as appropriate.
Minimum Qualifications Education
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.
Demonstrated knowledge of Good Clinical Practice (GCP), research ethics, and IRB processes.
Proficiency in medical record systems (e.g., Epic) and electronic data capture tools (e.g., REDCap).
Experience working in cardiovascular genetics or inherited arrhythmia syndromes (e.g., ARVC, HCM, LQTS).
Familiarity with natural history or registry-based clinical studies.
Prior experience coordinating NIH- or industry-sponsored research.
License/certifications
MA RN license required.
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.
#J-18808-Ljbffr
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 Responsibilities Clinical and Research Coordination
Coordinates the recruitment, screening, consent, and enrollment of eligible participants into the natural history study.
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.
Conducts structured interviews and standardized questionnaires to capture detailed medical and family histories.
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).
Monitors participant safety and well-being throughout study activities; promptly reports and documents adverse events.
Provides education to participants and families regarding study procedures, follow-up requirements, and genetic counseling resources.
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).
Participates in internal audits, data quality reviews, and monitoring visits.
Supports the preparation of regulatory submissions, amendments, and annual reports.
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.
Participates in team meetings, case reviews, and protocol development discussions.
Contributes to manuscripts, abstracts, and presentations summarizing study findings as appropriate.
Minimum Qualifications Education
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.
Demonstrated knowledge of Good Clinical Practice (GCP), research ethics, and IRB processes.
Proficiency in medical record systems (e.g., Epic) and electronic data capture tools (e.g., REDCap).
Experience working in cardiovascular genetics or inherited arrhythmia syndromes (e.g., ARVC, HCM, LQTS).
Familiarity with natural history or registry-based clinical studies.
Prior experience coordinating NIH- or industry-sponsored research.
License/certifications
MA RN license required.
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.
#J-18808-Ljbffr