Registry Program Manager

PFF Registry Program Manager-Remote /Hybrid

Job Summary:

The Program Manager will coordinate and manage projects related to the PFF Registry Program, a disease registry composed of patients, families, and caregivers impacted by pulmonary fibrosis.

The PFF Registry program currently comprises two distinct databases that track the care of patients with broadly defined interstitial lung diseases. The PFF Patient 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, the PFF Care Center Registry, to be available to support relevant PF research questions, augmenting outreach to the PF community to engage with the program, and incorporating stakeholders into the Registry program.

Duties/Responsibilities:

Work collaboratively with PFF Registry external partners, as well as across internal PFF departments to achieve key goals and objectives. Monitor and follow-up with all appropriate partners and departments on project development.

Coordinate and manage assigned projects related to the PFF Registry Program. Outline the tasks involved in the project and plan accordingly. Communicate expected processes and timelines for projects to supervisor as well as internal and external stakeholders.

Be the primary operations contact for the PFF Registry program and serve as the primary contact for the Data Coordinating Center (DCC) on the following tasks:

Facilitate collaboration with Care Center Network and other researchers

Facilitate IRB submissions

Maintain current enrollment logs

Ensure compliance with federal, state, local, industry, contractual, and company regulations, standards, specifications, and best practices for clinical research.

Maintain up-to-date and organized files for all stages from concepts to completed pieces.

Initiate, develop, drive, and revise schedules in order to meet project deadlines.

Coordinate team briefings, internal reviews, and all meetings needed to complete assigned projects.

Run reports and collect data on the PFF Registry program to facilitate evaluation of impact and effectiveness and to improve ongoing processes.

Participate in team meetings and activities and contribute to process improvement plans.

Performs other related duties as assigned.

Required Skills/Abilities:

Able to work in a highly collaborative environment and take directions from supervisor and others.

Excellent verbal and written communication skills.

Excellent interpersonal and customer service skills.

Excellent organizational skills and attention to detail.

Excellent time management skills with a proven ability to meet deadlines.

Strong analytical and problem-solving skills.

Ability to prioritize tasks and to delegate them when appropriate.

Ability to execute projects under minimal supervision and work remotely.

Ability to process and manage data.

Thorough understanding of, or the ability to quickly learn about, the project being developed.

Proficient with Microsoft Office Suite and related software.

Education and Experience:

Bachelor's degree in related field, which may include STEM, policy, public health, or health administration; MPH or similar graduate degree preferred.

At least three years of related work experience required.

Experience working with protected health information (PHI) and strong understanding of regulations and requirements for working with this data.

Experience working with physicians, researchers, peers, administrators, and staff of all disciplines

Strong understanding of the healthcare environment and clinical registries preferred

Clinical research experience as a research coordinator preferred

Physical Requirements:

Prolonged periods sitting at a desk and working on a computer.

Must be able to lift up to 15 pounds at times.

Occasional travel to conferences and the PFF office required

Salary Range: $85K- $90K -DOE

About the Pulmonary Fibrosis Foundation

At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.

As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.

Required Skills/Abilities:

Able to work in a highly collaborative environment and take directions from supervisor and others.

Excellent verbal and written communication skills.

Excellent interpersonal and customer service skills.

Excellent organizational skills and attention to detail.

Excellent time management skills with a proven ability to meet deadlines.

Strong analytical and problem-solving skills.

Ability to prioritize tasks and to delegate them when appropriate.

Ability to execute projects under minimal supervision and work remotely.

Ability to process and manage data.

Thorough understanding of, or the ability to quickly learn about, the project being developed.

Proficient with Microsoft Office Suite and related software.

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