Patient-Engaged Research and PF
About PF:
Pulmonary Fibrosis (PF) is a rare, serious chronic disease that causes tissue surrounding the air sacs in the lungs to become thick and stiff. Over time, this causes permanent scarring in the lungs that makes it progressively more difficult to breathe.
While there is no current cure for PF, certain treatments may slow the progression and help the lungs work better, which may extend the lifespan and improve patients’ quality of life.
Many people with PF also experience complications such as pulmonary hypertension and respiratory failure, which happen when the lungs cannot deliver enough oxygen into the bloodstream without support.
Common symptoms of PF are shortness of breath and cough, which can develop and worsen as the disease progresses. This varies from person to person and may happen slowly or quickly. Many people with PF also experience acute exacerbations or face other complications such as pulmonary hypertension and respiratory failure, which happen when the lungs cannot deliver enough oxygen into the bloodstream without support.
To learn more about PF, visit our resources page.
Patient-Engaged Research in PF:
Because PF is rare, many researchers may be less familiar with the impact it has on the lives of those it affects. By contributing as a member of a research team, you can improve researchers’ understanding of the impact of the disease so research studies are better designed to meet patient needs. Some people may not be symptomatic at first, but symptoms can develop and get worse as the disease progresses.
Patient-engaged research in PF can help researchers identify what are meaningful outcomes for patients and care partners. For instance, patient can help define how we measure quality of life.
Patient-engaged research in PF can help patients share their story, which could help researchers better understand risk factors.
Because the impact of PF on patients vary, patient-engaged research can help researchers answer patient-centered research questions about how specific treatments work in different groups of patients.
To get involved in patient-engaged research for PF, contact us.
Source: National Institutes of Health (NIH). For more information about PF, please visit our resources page.