Pulmonary Fibrosis Foundation Community Registry

Status Recruiting

Clinical Trial Summary

Pulmonary fibrosis (PF) results from a diverse group of health conditions and affects the lives of patients (including those who are post lung transplant), caregivers and family members. The Pulmonary Fibrosis Foundation Community Registry will offer an online portal where participants can self-enroll and directly contribute information about their experience with PF to be compiled into a longitudinal data set for use by researchers.

Clinical Trial Description

The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups: 1. Patients with PF, including those who are post lung transplant 2. Caregivers of patients with PF 3. Family members of patients with PF This is an online registry open to individuals affected by PF in the US. It is not associated with a physical location or institution. Individuals may self-enroll online and contribute data to the Community Registry by answering a series of surveys at regular intervals. Participants may also elect to be contacted about future research projects through the PFF Community Registry portal. However, this is not required to participate in the Community Registry itself. ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT05382572
Study type	Observational [Patient Registry]
Source	Pulmonary Fibrosis Foundation
Contact	Misha Cadet, MPH
Phone	312-414-1590
Email	mcadet@pulmonaryfibrosis.org
Status	Recruiting
Phase
Start date	July 11, 2022
Completion date	July 1, 2025

View Details

See also
Status	Clinical Trial	Phase
Active, not recruiting	`NCT05984992` - The First-in-human Study of SRN-001 in Healthy Participants	Phase 1
Active, not recruiting	`NCT04312594` - Study of Jaktinib Hydrochloride Tablets in Participants With Idiopathic Pulmonary Fibrosis	Phase 2
Recruiting	`NCT03865927` - GKT137831 in IPF Patients With Idiopathic Pulmonary Fibrosis	Phase 2
Completed	`NCT03979430` - Early Detection of Acute Exacerbation in Patients With Idiopathic Lung Fibrosis - a Pilot Study	N/A
Enrolling by invitation	`NCT04905693` - Extension Study of Inhaled Treprostinil in Subjects With Idiopathic Pulmonary Fibrosis	Phase 3
Terminated	`NCT04419558` - Zephyrus II: Efficacy and Safety Study of Pamrevlumab in Participants With Idiopathic Pulmonary Fibrosis (IPF)	Phase 3
Completed	`NCT03725852` - A Clinical Study to Test How Effective and Safe GLPG1205 is for Participants With Idiopathic Pulmonary Fibrosis (IPF)	Phase 2
Terminated	`NCT03573505` - An Efficacy and Safety Study of BG00011 in Participants With Idiopathic Pulmonary Fibrosis	Phase 2
Recruiting	`NCT04148157` - Quality of Life in IPF - Patient and Physician Perceptions
Active, not recruiting	`NCT03222648` - Structured Exercise Training Programme in Idiopathic Pulmonary Fibrosis	N/A
Completed	`NCT02257177` - RCT (Randomized Control Trial) of TD139 vs Placebo in HV's (Human Volunteers) and IPF Patients	Phase 1/Phase 2
Completed	`NCT02268981` - Effects of an Oxymizer® During Daytime in Patients With Pulmonary Fibrosis (IPF)	N/A
Withdrawn	`NCT01524068` - A MultiCenter Study of Combined PEX, Rituximab, and Steroids in Acute Idiopathic Pulmonary Fibrosis Exacerbations	Phase 2
Enrolling by invitation	`NCT01382368` - Acute Effect of Sildenafil on Exercise Tolerance and Functional Capacity in COPD, IPF and Post Pneumonectomy Patients	Phase 4
Completed	`NCT01110694` - Prospective Observation of Fibrosis in the Lung Clinical Endpoints Study
Completed	`NCT01199887` - Trial Of IW001 in Patients With Idiopathic Pulmonary Fibrosis	Phase 1
Active, not recruiting	`NCT02951416` - Clinical Course of Interstitial Lung Diseases: European IPF Registry and Biobank
Terminated	`NCT00981747` - Targeting Vascular Reactivity in Idiopathic Pulmonary Fibrosis	Phase 2/Phase 3
Completed	`NCT00540475` - Pennsylvania Idiopathic Pulmonary Fibrosis Research Registry
Completed	`NCT00532233` - SD, IL-13 Production Rate in IPF	Phase 2