Job Description

Plans, directs, coordinates and implements programs. Evaluates patients’ status, instructs appropriate staff regarding significant techniques, and acts as a resource person to the health care team.

Job Responsibility

• Reviews all protocols to maintain quality control and patient safety, and to assist Physicians with patient’s compliance.
• Participates in quality meetings to discuss cases and review clinical outcomes.
• Meets the educational needs of families and other health care professionals concerning the care of the patients.
• Performs related duties as required. All responsibilities noted here are considered essential functions of the job under the Americans with Disabilities Act. Duties not mentioned here, but considered related are not essential functions.
• Patient & Family Education:
• Provide comprehensive, age-appropriate, and culturally sensitive education to patients and families regarding gene therapy, including disease overview, treatment rationale, pre-screening work-up, mobilization and cell collection by apheresis, pre-transplant work-up, conditioning regimens, infusion process, potential side effects, home care instructions, and long-term follow-up.
• Assess whether patients and families have appropriate understanding of complex medical information, financial implications, logistical challenges (e.g., housing, travel), and psychosocial aspects of gene therapy.
• Utilize diverse educational materials, methods, and resources to meet individual learning needs.
• Care Coordination & Navigation:
• Serve as the primary point of contact for patients and families, and, additionally, act as a liaison with the multidisciplinary care team (physicians, advanced practice providers, nurses, social workers, child life specialists, psychologists, pharmacists, financial counselors, research coordinators, transplant coordinators).
• Facilitate efficient scheduling of appointments outside of the usual SCTCT workflow like initial consultations, subspecialty consultations, and transfusion appointments.
• Facilitate provider access to medical records by helping patients and families complete authorization to share medical information forms in hard copy and electronically, especially for those whose primary hematology providers are outside CCMC.
• Optimize safety and ease during transitions of care between inpatient, outpatient, and home settings.
• Prevent delays in collection or infusion by educating patients and giving reminders about medications that must be discontinued prior to admission for apheresis or transplantation.
• Support patients and families in the fertility preservation process by connecting them with providers, tracking their appointments and procedures, and ensuring adherence to specified guidance.
• Clinical Support & Assessment:
• Conduct initial and ongoing nursing assessments to identify patient and family needs, concerns, and potential barriers to treatment.
• Monitor patient progress throughout the gene therapy process, identifying and reporting any changes in status, adverse events, or concerns to the appropriate medical team members.
• Provide direct nursing care within the scope of practice, by reinforcing treatment plans.
• Triage patient/family calls and escalate to appropriate providers.
• Implement assessments that will further our ability to understand and improve patient outcomes over time, like 6 minute walk test to understand pulmonary function or the NIH toolkit for neuropsychological assessment.
• Advocacy & Psychosocial Support:
• Act as a patient and family advocate, ensuring their voices are heard and needs are met within the healthcare system.
• Connect families with appropriate psychosocial support services, including counseling, support groups, and community resources.
• Address emotional, psychological, and spiritual needs associated with a chronic illness and intensive treatment.
• Documentation & Data Management:
• Maintain accurate, comprehensive, and timely documentation of all patient interactions, care plans, education, and communications in the electronic health record (EHR).
• Assist with data collection for program development, quality improvement initiatives, and research studies, ensuring compliance with institutional and regulatory guidelines.
• Program Development & Quality Improvement:
• Actively participate in the development and refinement of gene therapy workflows, patient education materials, and standard operating procedures.
• Contribute to quality improvement initiatives aimed at enhancing patient safety, outcomes, and satisfaction within the gene therapy program.
• Stay current with the latest advancements in gene therapy, SCD, and TDT treatment through continuous learning and professional development.

Job Qualification

• Bachelor’s Degree in Nursing (BSN) required. Current License to practice as a Registered Professional Nurse in New York State required, plus specialized certifications as needed.
• 3-5 years of technical experience and 0-2 years of leadership / management experience, required.
• Master of Science in Nursing (MSN) preferred.
• Basic Life Support (BLS) and Pediatric Advanced Life Support (PALS) preferred.
• Skills & Abilities:
• Certification in Pediatric Hematology/Oncology Nursing (CPON) or Oncology Certified Nurse (OCN) preferred.
• Chemotherapy/Biotherapy certification preferred within 6 months of hire.
• Experience:
• Minimum of 5 years of recent clinical nursing experience in a pediatric acute care setting preferred.
• At least 3 years of specialized experience in Pediatric Hematology/Oncology, Bone Marrow Transplantation (BMT)/Cellular Therapy, or Gene Therapy strongly preferred.
• Experience in a patient navigation or care coordination role is highly desirable.
• Demonstrated experience in patient and family education for complex medical conditions preferred.
• Exceptional communication skills (verbal, written, and active listening) with the ability to convey complex medical information clearly and empathetically to diverse audiences.
• Strong critical thinking, clinical assessment, and problem-solving abilities.
• Outstanding organizational skills, attention to detail, and ability to manage multiple priorities in a fast-paced environment.
• High degrees of empathy, compassion, and cultural sensitivity.
• Ability to work independently as well as collaboratively within a multidisciplinary team.
• Proficiency with Electronic Health Records (EHR) systems and Microsoft Office Suite.
• Demonstrated resilience, adaptability, and a proactive approach to challenges.
• Knowledge of research protocols and clinical trial processes is a plus.

*Additional Salary Detail

The salary range and/or hourly rate listed is a good faith determination of potential base compensation that may be offered to a successful applicant for this position at the time of this job advertisement and may be modified in the future. When determining a team member's base salary and/or rate, several factors may be considered as applicable (e.g., location, specialty, service line, years of relevant experience, education, credentials, negotiated contracts, budget and internal equity).