Pulmonary Fibrosis (PF) is a rare, progressive, irreversible lung disease. There is no cure for IPF, although treatments can improve quality of life. Engaging people with IPF in research has unique challenges due to condition characteristics, thereby warranting specialized attention to discover how to best partner with people with IPF, and other critically ill populations, to conduct patient-engaged research.

This project builds upon a previous capacity building project that educated PF patients and care partners about the value of patient engagement in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER). The current project will bring together patients, care partners, clinicians, and researchers to explore potential research topics, prioritize research questions and organize stakeholders into workgroups to initiate research. Ultimately, we will create a research roadmap to facilitate future PCOR/CER in PF. Convening will take place virtually, with multiple opportunities for participation, and is open to community members nationwide. You can learn more about this effort at www.pfpatientengagement.org.

This project is funded by Patient-Centered Outcomes Research Institute (PCORI), Eugene Washington Engagement Award Program. For additional information about this research project, please contact John Marshall.

Congenital femoral deficiency (CFD) is a condition in which a child is born with a malformed or missing femur, resulting in a shortened limb that may limit functionality. The treatment options for CFD vary substantially in their benefits and risks, and long- term evidence does not reflect superiority of one treatment over another. The best treatment choice is preference-sensitive, depending on individual values, preferences, and priorities.  

The objective of this research is to improve shared decision making between patients, caregivers and clinicians making treatment decisions for PFFD through a better understanding of patient and caregiver priorities and preferences and through the development of a decision aid.  

This research is funded by Shriners Children's and is being conducted in partnership with the pediatric orthopedic team at Shriners Children's Philadelphia. 

Amyotrophic Lateral Sclerosis (ALS) is a progressive, neurodegenerative disease that weakens muscles and reduces their functionality. The goal of clinical care for people living with ALS (PALS) is to slow disease progression, optimize independence, and manage symptoms to reduce disease burden, lengthen survival, and improve quality of life. The Academy of Neurology (AAN) quality measures recommend a multidisciplinary approach to providing healthcare for PALS.  

The objective of this study is to explore the value of multidisciplinary care from various perspectives, including the provider and patient perspective. We will explore the financing of multidisciplinary care, cost of illness across treatment settings, and the value of multidisciplinary care in ALS in terms of quality of care and patient/caregiver satisfaction. The data collected will provide insight into aligning healthcare delivery models with patient expectations.  

This research is funded by a grant from Mitsubishi Tanabe Pharma (MT Pharma). For additional information about this research project, please contact Laura Chisholm.

Lung transplant is a treatment of last resort for patients with end-stage lung disease. The objective of this research is to understand patient and caregiver priorities, specifically for quality of life outcomes, and informational needs across stages of the lung transplant process to develop and pilot a decision aid for lung transplant. We will use a mixed method approach and collaborate with Temple Lung Center to help improve decision making for patients facing the complex decision to undergo lung transplant.  

This project is funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health under Award Number K01HL161330. For additional information about this project, please contact Sophia Kreider.