PaTH Clinical Data Research Network (CDRN) Idiopathic Pulmonary Fibrosis (IPF) Clinician Patient Partnership Cohort

Launched by UNIVERSITY OF PITTSBURGH · Apr 2, 2015

Keywords

ClinConnect Summary

The PaTH Clinical Data Research Network is conducting a study focused on Idiopathic Pulmonary Fibrosis (IPF), a serious lung condition that causes scarring of the lungs and makes it hard to breathe. This trial aims to gather and analyze information from electronic health records and feedback from patients to answer important questions about IPF from the perspectives of both patients and healthcare providers. The goal is to improve understanding and care for those living with this condition.

To be eligible for participation, individuals must be adults diagnosed with IPF and have received care at a specific pulmonary clinic within the last 18 months. Unfortunately, those under 18, who have passed away, are not proficient in English, have had a lung transplant, or are already enrolled in this study at another site cannot participate. While the study is currently active, it is not recruiting new participants at this time. If eligible, participants can expect to contribute valuable insights that may help improve the treatment and management of IPF in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • The target study population is adults identified as having IPF (through the PaTH IPF computable phenotype algorithm or a local IPF registry).
• Exclusion Criteria:
• • Age \<18 years
• • Deceased
• • Not proficient in English
• • Has not had at least one outpatient encounter in the past 18 months at the PaTH health system's pulmonary specialty clinic through which they are recruited
• • Lung transplant
• • Already enrolled in the PaTH Clinician-Patient Partnership Cohort at another PaTH institution