The Cystic Fibrosis Foundation (CF Foundation) and its employees embrace their commitment to its core values. These core values are the pillars on which the CF Foundation stand and will continue to sustain us as we move forward.
- Keep sight of what really matters: Our decisions are based on what is best for people with cystic fibrosis and their families.
- Aspire for excellence in all we do: We take pride in our work. We are committed to continuous learning and improvement.
- Stronger together: We collaborate and work together so that we can learn more and achieve more.
- Innovate with courage: We embrace challenges. We reach beyond boundaries in pursuit of our vision.
- Care about our people: We deeply care about each other and all who support our shared mission. We listen with respect. We support one another.
The Cystic Fibrosis Foundation, a highly regarded voluntary health services agency, is seeking a Patient Registry Coordinator in the National Headquarters office in Bethesda, Maryland. The CF Foundation Patient Registry (CFFPR) is a comprehensive, longitudinal database that collects information on prescribed therapies, key medical outcomes, and health care utilization. The CFFPR holds information on cystic fibrosis patients receiving care at CF Foundation accredited care centers. Personnel at these care centers enter data into the web-based registry application, PortCF.
This position serves to provide administrative and other support to the Registry team and to the users of the registry-related IT applications. The examples of the working activities are email and phone communications with the registry users, coordinating CFFPR meetings, updating documentation, assisting in reports production, and providing support on special projects. The person should have excellent communication skills, be interested in working with healthcare data and have strong attention to details.
- Regularly communicate with Care Center Network partners to answer questions related to the registry by responding to emails, in a timely and efficient manner.
- Assist with editing and review of documentation, user manuals, and other educational resources.
- Assists in maintaining or developing infographics.
- Maintain and organize existing filing system.
- Provide meeting support including scheduling meetings, setting up online video conferencing system, and preparing and distributing agenda, supporting documents, and minutes.
- Document, track, and manage issues, including timely update of issue/risk logs, facilitating development and documenting action plans.
- Assist with production, review, and distribution of annual reports.
- Assist in the maintenance of standard operating procedures for the Patient Registry.
- Provide ongoing support to the Registry team with special projects and duties as needed.
- Bachelor’s degree in healthcare or technical fields.
- One to two years of relevant work experience.
- Intermediate skills in MS Office Suite (Word, PowerPoint, Excel).
- Knowledge of Adobe Illustrator is a plus.
- Ability to manage multiple tasks and shift priorities as needed.
- Strong attention to detail for both completeness and accuracy.
- Strong writing, communication, and organization skills.
- Strong interpersonal skills.
- Normal office environment with little exposure to excessive noise, dust and temperature.
- No heavy lifting required.
- Minimal travel (e.g., 2x/yr.) to conferences and meetings, as necessary.
The above is intended to describe the general content of and requirements for the performance of this job. It is not to be construed as an exhaustive statement of essential functions, responsibilities or requirements.