Patient Registry, Research Associate
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.
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 Patient Registry Research Associate serves a vital role in coordinating the CFF intramural research program. The CFF has pioneered a patient-centered care model and the Patient Registry is considered one of the most important achievements in the history of rare disease research. The Research Associate is responsible for collaboration with the CFF Patient Registry/Comparative Effectiveness Research (CER) Committee to manage and implement projects that address high priority research questions of interest to CFF and the broader CF community. The Research Associate is involved in all stages of research projects from design and analysis to dissemination. The Research Associate will work closely with experts across the spectrum of CF-related disease, which includes pulmonology, transplantation, and other clinical specialties.
ESSENTIAL DUTIES AND RESPONSIBILITIES:
- Conduct analyses for CER Committee prioritized projects.
- Collaborate with CFF patient registry team, CER committee members and other CF community stakeholders on study design and data analysis.
- Prepare conference submissions and contribute to peer-review manuscript development.
- Fulfill analysis requests for data queries for external and internal stakeholders.
- Provide project management and support for all CER priority projects, and international projects.
- Coordinate external working groups addressing key methodological issues.
- Collaborate with the Patient Registry Team on registry operations, data quality and data dissemination, including annual data reports and conference participation.
- Responsible for receiving and maintaining IRB approval for all projects.
- Manage other tasks for patient registry research team as needed.
KNOWLEDGE, SKILLS AND ABILITIES REQUIRED:
- Masters of Public Health or Masters of Science with a concentration in Epidemiology, Biostatistics or Data Science and at least one year of experience.
- Knowledge of SAS or R statistical programming software required.
- Understanding of human subjects protection and HIPAA.
- Experience with manuscript development and reference management an asset.
- Experience conducting research with registry data or large datasets an asset.
- Experience working with external committee members and/or clinicians an asset.
- Strong oral and written communication skills required.
- Strong organizational skills required.
- Ability to create and manage internal deadlines.
- Reports to the Director, Biostatistics. No direct reports.
- HIPAA secure office.
- Normal office environment with little exposure to excessive noise, dust and temperature.
- No heavy lifting required.
- Expected to travel to annual North American CF conference; potential for minimal additional travel to other meetings and events as necessary. Includes car, air, train and overnight stays.
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.
The Cystic Fibrosis Foundation is committed to offering competitive compensation (base pay and incentive), benefits, and professional development opportunities that maximize our ability to recruit, retain, reward, and motivate a highly-qualified and diverse workforce. Our comprehensive benefits package includes medical, dental, and vision coverage; generous time-off and leave policies; a holistic well-being program; health savings and flexible spending accounts; employer-provided life and disability insurance; retirement savings benefits; and a variety of work-life benefits to support employees and their family members.
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 .