The Pulmonary Fibrosis Foundation (PFF) is a 501(c)(3) nonprofit organization founded by brothers Albert Rose and Michael Rosenzweig, PhD. Their sister Claire died from idiopathic pulmonary fibrosis (IPF), and they were both later diagnosed with the disease. Their goal was to build an organization dedicated to identifying effective treatments and providing support for those living with the disease. This vision shaped the PFF to become what it is today – the leading patient advocacy organization for the PF community. The PFF continues to be the foremost resource for our community by raising awareness, providing disease education, and driving research to find a cure.
Vision for the PFF Registry:
The PFF’s vision for the Registry program is to drive PF research by using the Registry as a tool to answer key research questions. The Foundation is uniquely positioned to identify and address critical questions that are not fully being answered through other mechanisms. For example, what are best practices in care for PF patients? How will new drug approvals and multi-drug therapy impact patients in the real world? What endpoints could make it easier and faster to run clinical trials and explore new disease treatments? The PFF intends to lead research and publications exploring these types of questions using the Registry as a resource. Additionally, the PFF Registry will be available for researchers to use to investigate other research topics. The Medical Adviser for the PFF Registry will play a key role in realizing the PFF’s vision for the Registry.
The near-term plans for the PFF Registry program include:
- Incorporating new active clinical data
- More comprehensively incorporating stakeholders (patients, researchers, healthcare providers and corporate partners) into the design and future of the Registry program
- Ensuring the design of the Registry enables the PFF and other researchers to answer critical research questions
- Augmenting outreach efforts to the PF community to increase engagement with the program
- Creating a business plan to ensure the long-term sustainability of the Registry program
Senior Medical Advisor, PFF Registry
Job Summary:
The Senior Medical Advisor, PFF Registry, will oversee and guide the scientific approach for the PFF Registry. This comprehensive observational research program enables investigators to discover new ways to improve care and outcomes for patients living with pulmonary fibrosis (PF).
The PFF Registry program currently comprises two distinct databases that track the care of patients with broadly defined interstitial lung diseases. The PFF Care Center Registry collected clinical data, biosamples, images, and patient-reported outcomes from patients with PF across the PFF Care Centers from 2016 to 2022. These data are being used by researchers to answer important questions on PF, including improving diagnosis and treatment. The PFF Community Registry began in 2022 and offers an opportunity for patients living with PF, lung transplant patients who have had PF, as well as their caregivers, and family members, to self-report information to help us move toward improved outcomes.
The upcoming goals of the PFF Registry program include adding new active clinical data to be available to support relevant PF research questions, augmenting outreach to the PF community to engage with the program, and incorporating stakeholders (patients, researchers, healthcare providers and corporate partners) into the Registry program. This role will lead the development of the scientific strategy for the Registry program, including ancillary study development and use of the Registry for research questions.
Qualifications
- A doctoral degree (MD, PhD, or equivalent) in a relevant scientific or medical field, extensive experience in medical research, and a proven track record of leading and managing research projects
- Experience with multi-center registries in pulmonary fibrosis
Time Commitment & Reporting Structure:
- Will devote 20-25% of time to the PFF and PFF Registry
- Report to the PFF Chief Medical Officer (CMO)
Responsibilities:
- Participate as a member of the PFF Registry Steering Committee, and in the PFF Registry Scientific Review Committee
- Collaborate with the Senior Vice President (SVP) of Clinical Affairs & Quality, PFF CMO, and PFF Registry Steering Committee to develop strategy on research, operations, and finance that includes measurable goals and objectives for the PFF Registry; monitor and revise final strategy as needed
- Work closely with the SVP of Clinical Affairs & Quality to oversee governance (including the Steering Committee and Scientific Review Committee), strategy, clinical content, and other aspects of the PFF Registry as needed; be responsive to requests for review, comment, and/or approval
- Contribute to the engagement strategy to recruit and retain participants in the PFF Community Registry
- Collaborate with the Senior Medical Advisor, Care Center Network (CCN) and SVP of Clinical Affairs and Quality to cultivate relationships with CCN, including relationship management of PFF Care Center Registry principal investigators
- Develop and cultivate relationships with the larger scientific community to encourage use of PFF Registry data for research
- Work with the President and Chief Executive Officer, Chief Operating Officer (COO), Chief Development Officer, SVP of Clinical Affairs & Quality, and VP of Corporate Partnerships on outreach and relationship management of corporate, foundation, and individual donors; travel may be required
- Assist in business development efforts and attend meetings related to launching and managing corporate research initiatives based on PFF Registry data.
- Attend PFF Registry staff meetings, including but not limited to weekly calls with the CMO, COO, and SVP of Clinical Affairs & Quality, and also weekly operations calls with the SVP of Clinical Affairs & Quality and DCC, as needed
- Attend PFF Staff Meetings, including, but not limited to, the weekly Medical Team meetings to provide scientific guidance and further develop and enhance existing programmatic offerings
- Attend PFF events, including, but not limited to, speaking at conferences and donor and patient events; travel may be required
Please submit a current CV and a cover letter for this position to: hr@pulmonaryfibrosis.org. Include in the cover letter your vision for the PFF Registry program for the next five years and relevant experience that will allow you to be successful in the role.