DeciPHer-ILD: A Real-world Patient Registry in Group 3 Pulmonary Hypertension Associated With Interstitial Lung Disease (PH-ILD)
United Therapeutics
Summary
This is a prospective, real world, multicenter, registry of patients with pulmonary hypertension associated with interstitial lung disease (PH-ILD) and interstitial lung disease (ILD).
Description
The purpose of this study is to capture and analyze patient characteristics, treatment patterns, and clinical outcomes of patients with PH-ILD, with the goal of enhancing our current understanding of the disease state and its treatment outcomes. The study also aims to describe the disease trajectory of ILD patients at risk of pulmonary hypertension (PH). In this registry, patients will be enrolled into 1 of 4 cohorts. Cohort 1 will include approximately 200 patients who are not receiving inhaled treprostinil at time of study enrollment. Cohort 2 will include approximately 300 patients who are…
Eligibility
- Age range
- 18+ years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: 1. Adults aged 18 years or older 2. Diagnosis of fibrotic ILD based on high-resolution computed tomography imaging, including but not limited to: 1. Idiopathic interstitial pneumonia, including idiopathic pulmonary fibrosis 2. Autoimmune ILD 3. Chronic hypersensitivity pneumonitis 4. Nonspecific interstitial pneumonia 5. Occupational lung disease 6. Combined pulmonary fibrosis and emphysema with fibrosis greater than the extent of emphysema on lung imaging as determined by the Investigator 3. For patients to be eligible for Cohorts 1 to 3: RHC confirmed…
Interventions
- OtherProspective study assessments
Patients will complete prospective assessments at 6- and 12-month intervals for up to 5 years. There will be 1 check in at the first 3 months of enrollment. Follow up visits will include a ±45 day visit window. If an assessment is performed within 45 days of the visit window as part of the patient's standard of care, those values will be used in place of a prospective assessment.
Locations (62)
- University of Alabama at BirminghamBirmingham, Alabama
- Banner Health - University Medical Center PhoenixPhoenix, Arizona
- University of Colorado - Anschutz Medical CampusAurora, Colorado
- National Jewish HealthDenver, Colorado
- Pasquerilla Healthcare Center - Georgetown UniversityWashington D.C., District of Columbia
- University of FloridaGainesville, Florida