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 – the world’s leader in the search for a cure for cystic fibrosis, and one of the most innovative and successful organizations of its kind – is seeking a Clinical Research Community Engagement Specialist.
We are a nonprofit, donor-supported organization that has raised and invested billions of dollars to help develop cystic fibrosis therapies that have changed the lives of people with this disease. Nearly every CF medicine available today was made possible because of Foundation support.
The CF Foundation Patient Registry (CFFPR) includes demographic and clinical information about individuals with CF in the United States. Academic researchers can apply to use the registry’s data for their research. The Patient Registry Research Specialist is primarily responsible for the oversight and management of this process from initial submission through to project close out and dissemination.
ESSENTIAL DUTIES AND RESPONSIBILITIES:
- Oversees submission of applications for data requests from external researchers. Manages the initial submission, review, approval process, compliance with data release regulations and conducts annual follow-up with all current projects.
- Manage the review of all abstracts, posters and manuscripts that use CFFPR data
- Provide and present summaries of data requests to key stakeholders
- Collaborate with developers to enhance the online data submission portal and expand its use as additional data sources are included
- Manage the development of lay summaries for manuscripts published using Registry data and lead the Research Summary Review Committee.
- Collaborates with the Patient Registry Operations Team on registry operations, data quality and data dissemination.
KNOWLEDGE, SKILLS AND ABILITIES REQUIRED:
- Master’s degree in Science or other Health related field and 2+ years experience or Bachelor’s and 4+ years’ experience working in research.
- Understanding of the research process and components of a research proposal
- Ability to work independently, manage multiple daily tasks, and shift priorities as needed.
- Strong oral and written communication skills required.
- Excellent interpersonal and collaborative skills with both in-person and remote colleagues.
- Understanding of regulations and compliance around protected health information
- Experience preparing submissions for review by an Institutional Review Board
- Experience with patient registries and registry data an asset.
The CF Foundation is an equal opportunity employer that is committed to being an employer of choice, not just a good place to work, but a great and inclusive place to work. We strive to recruit and maintain a diverse workforce. Qualified applicants will receive consideration for employment without regard to race, physical or mental disability, color, religious creed, ancestry, national origin, religion, age, sex, marital status, genetic information or testing, gender identity and expression, sexual orientation or status as a Vietnam-era or special disabled veteran or any characteristic protected by law.
Reasonable Accommodation Notice
The CF Foundation is committed to providing reasonable accommodations for qualified individuals with disabilities in our job application procedures. If you need assistance or would like to request an accommodation due to a disability, please contact us at HROps@cff.org .