Nurse Clinical Coordinator - Pediatric Cystic Fibrosis

Within the Stead Family Department of Pediatrics, Division of Pulmonary Medicine, this position evaluates center outcomes, addresses quality improvement initiatives and examines dynamic health care issues, including nutritional status, infection control and pulmonary treatment and/or metabolic issues rapidly and effectively for cystic fibrosis (CF) patients. Responsibilities would also include data entry to keep the Patient Registry current and accurate.

The Nurse Coordinator will be primarily dedicated to the CF Program. However, occasional cross-coverage for other nursing/clinic needs may be required to support a collaborative team environment. These cross-coverage needs will be discussed in advance with the CF program director and nursing supervisor to ensure proper coordination and alignment.

This position requires a Baccalaureate degree in Nursing.

Duties to include, but are not limited to:

Compliance with Internal Policies and External Regulations for Safe and Effective Care Delivery and Health Profession Education

CF Patient Registry PORTCF

• Assist the primary investigator (PI)/Center director in overseeing mechanisms to ensure accurate data entry into CF Patient Registry
• Review CF Patient Registry data entry fields to understand information to be collected and work with hospital systems to ensure data collection
• Periodically review data collection forms and processes for changes
• May oversee and/or perform data entry depending on staffing and resources
• Complete annual data upload and submission to PortCF  
• Participate and coordinate staff training from material and sessions available for CF
• Assist in obtaining Registry consents for patients new to the center
• Complete and follow institution and IRB training requirements to participate in research
• Assist PI, Center Director, or Research Coordinator as determined within individual centers as follows: consenting subjects, regulations on record keeping of consent forms and study records/documents, continuing reviews and study modifications
• Generate center or patient specific reports and teaching others to generate reports using report writer tool
• Assist in obtaining, uploading and submission of Annual Surveys

Specialized Services for Nursing Care

Newborn Screening for CF

• Oversee newborn screenings processes performed at the local CF Center, as applicable.
• Communicate with state newborn screening staff and establish processes specific to CF newborn screening
• Evaluate all abnormal newborn screenings referred to the CF Center
• Ensure that all positive cystic fibrosis tests are identified and followed appropriately by the CF Center team
• Assist in arranging sweat chloride testing for infants with abnormal screens
• Coordinate with core nursing and scheduling to update clinic templates as needed to accommodate add-on visits for infants with abnormal newborn screen
• Provide newborn screening support and education to families
• Assist with ambiguous or CRMS cases
• Follow up on missed appointme