Idiopathic Pulmonary Fibrosis and Interstitial Lung Disease Prospective Outcomes Registry

Conditions

• Idiopathic Pulmonary Fibrosis, Interstitial Lung Disease

Eligibility Criteria

Sex

ALL

Age

21 Years - N/A

Healthy Volunteers

Not accepted

Study Details

The Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) Registry started recruiting in 2014 with the objective of studying Idiopathic Pulmonary Fibrosis. In 2018, the registry expanded to include recruitment of participants with other chronic fibrosing interstitial lung diseases (ILDs) with progressive phenotype also referred to as progressive fibrosing interstitial lung diseases in the Chronic Fibrosis Interstitial Lung Disease with Progressive Phenotype (ILD-PRO) Registry. When the third phase of the registry begins, the IPF-PRO registry will enroll additional patients with idiopathic pulmonary fibrosis. This IPF-PRO registry is a prospective registry that will collect information regarding the natural history, health care interactions, participant reported questionnaire data to assess quality of life, and the methods of treatment of participants with a diagnosis of idiopathic pulmonary fibrosis (IPF) or of another chronic fibrosing interstitial lung disease (ILD) with progressive phenotype established at the enrolling centers. In addition, blood samples and chest image studies will be collected and banked for future research projects.

Key Dates

Start date

Jun 30, 2014

Status verified

Jul 2025

Primary completion

Jan 31, 2028

Completion

Jan 31, 2031

Study Design

Enrollment

3,000 participants (estimated)

Arms

• Arm: Subjects with a new IPF diagnosis
  Subjects with a new diagnosis of IPF established at the time of enrollment in the registry
• Arm: Subjects with a non-IPF ILD diagnosis
  Subjects with a diagnosis of a non-IPF ILD of any duration, including, but not limited to Idiopathic Non-Specific Interstitial Pneumonia (iNSIP), Unclassifiable Idiopathic Interstitial Pneumonias (IIPs), Interstitial Pneumonia with Autoimmune Features (IPAF), Autoimmune ILDs such as Rheumatoid Arthritis (RA-ILD) and Systemic Sclerosis (SSc-ILD), Chronic Hypersensitivity Pneumonitis (HP), Sarcoidosis or Exposure-related ILDs such as asbestosis with progressive phenotype
• Arm: New Subjects with a new IPF diagnosis
  Subjects with a new diagnosis of IPF established at the time of enrollment in the registry not previously enrolled in the registry.

Primary Outcome Measure

Data on natural history of IPF & non-IPF chronic fibrosing ILD [ Time Frame: End of Study (3 years after last patient will be enrolled) ]

Central Contacts

• Rosalia Blanco
  919-660-0890
  [email protected]

Locations (44)

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