Sickle Cell Program Coordinator

Sickle Cell Program Coordinator

The Sickle Cell Coordinator is a registered nurse responsible for coordinating comprehensive, patient-centered care for individuals living with sickle cell disease (SCD). This role serves as a clinical liaison, educator, advocate, and navigator across the continuum of care to improve access, reduce avoidable hospitalizations, enhance patient outcomes, and support quality-of-life initiatives.

The coordinator works collaboratively with hematologists, primary care providers, emergency departments, infusion services, social work, and community partners to ensure timely, evidence-based, and equitable care delivery.

The Sickle Cell Program Coordinator supports the planning, implementation, daily coordination, and ongoing development of the sickle cell program. This role helps ensure that clinical operations, patient navigation, education, quality improvement, grant-related activities, and community partnerships are aligned to support accessible, coordinated, and high-quality care for patients and families affected by sickle cell disease.

Key Responsibilities:

• Serve as the primary point of contact for patients with sickle cell disease.
• Coordinate outpatient, inpatient, infusion, and specialty appointments.
• Facilitate transitions of care (ED to home, inpatient to outpatient, pediatric to adult care).
• Monitor high-risk patients and proactively intervene to prevent avoidable admissions.
• Ensure adherence to individualized care plans and pain management protocols.

Clinical Support:

• Conduct nursing assessments and symptom triage.
• Collaborate with hematology providers on disease management plans.
• Assist with infusion coordination (e.g., transfusions, disease-modifying therapies).
• Monitor patients on hydroxyurea and other SCD-related therapies.
• Support chronic pain management strategies within scope of practice.

Patient & Family Education:

• Provide education on:
• Disease process and complications
• Medication management
• Pain crisis prevention and early intervention
• When to seek emergency care
• Promote self-management and health literacy.
• Support adherence to preventive care and vaccination schedules.

Emergency Department Collaboration:

• Partner with ED teams to support standardized sickle cell protocols.
• Advocate for evidence-based pain management.
• Assist in developing individualized ED care plans.

Psychosocial & Community Resource Support:

• Identify social determinants of health impacting care.
• Collaborate with social work to connect patients to transportation, financial assistance, behavioral health, and community resources.
• Support transition readiness for adolescent-to-adult care.

Quality & Program Development:

• Track quality metrics (ED utilization, admissions, readmissions).
• Grant writing to support program and patient funding
• Participate in performance improvement initiatives.
• Assist in development of standardized care pathways.
• Contribute to program data collection
• Coordinate program activities, meetings, workflows, and communication across clinical, operational, and community partners.
• Maintain program documentation, patient tracking tools, referral logs, and outcome reports to support program monitoring and growth.
• Support grant reporting, funding requests, community outreach efforts, and preparation of materials for internal and external stakeholders.

Qualifications:

Required:

• Current Registered Nurse (RN) license in state of practice
• Bachelor of Science in Nursing (BSN) preferred
• Minimum 35 years clinical nursing experience
• Experience in hematology, oncology, infusion, or chronic disease management
• In person only

Preferred:

• Certified Pediatric Hematology Oncology Nurse (CPHON) or Oncology Certified Nurse (OCN)
• Case management or care coordination experience
• Experience working with underserved or medically complex populations
• Grant writing experience

Core Competencies:

• Strong clinical assessment and triage skills
• Cultural humility and trauma-informed care approach
• Excellent communication and interdisciplinary collaboration
• Patient advocacy and system navigation expertise
• Data tracking and quality improvement understanding
• Ability to manage high-risk, high-utilization populations

Work Environment:

• Combination of outpatient clinic, infusion center, and hospital settings
• May require occasional evening or on-call support depending on program structure
• High degree of patient interaction and care coordina