Pulmonary Fibrosis Contact Registry

NCT01935726 | Completed DMC

• 1 other identifier: PCORI 4134
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 1

Brief Summary

As the name states, contact registries securely store contact information from groups of reasonably well-characterized patients (or primary supporters/caregivers) who are interested in being informed about ongoing or future research opportunities. Pulmonary fibrosis (PF) is a condition for which effective therapies have remained elusive, making drug trials and interventional research studies a mainstay in the PF arena over the last decade and for the foreseeable future. A PF Contact Registry will be a conduit to collect, analyze, and disseminate de-identified, group-level data on the clinical phenotypes of PF patients and will house contact information from patients who wish to be informed about research opportunities for which they may qualify. Data contained in the Registry will help inform research hypotheses and guide investigators as they develop research protocols by providing them with numbers of potential subjects who meet particular inclusion/exclusion criteria.

Conditions

Pulmonary Fibrosis of Any Cause; Primary Supporters/Caretakers of Patients With Pulmonary Fibrosis

Keywords

Pulmonary fibrosis; Interstitial lung disease; Connective tissue disease; Chronic hypersensitivity pneumonitis; Idiopathic pulmonary fibrosis

Outcome Measures

Primary Outcomes (1)

• Number enrolled

  This is a contact registry. We will enroll as many patients and primary supporters/caretakers as possible.

  20 years

Study Arms (1)

Pulmonary fibrosis patients or their caretaker/supporter

Patients with pulmonary fibrosis of any cause (idiopathic, related to connective tissue disease \[e.g., rheumatoid arthritis, systemic sclerosis/scleroderma, dermato-/polymyositis, sjogren's syndrome\], familial or genetic) or the primary supporter/caregiver of a patient with pulmonary fibrosis

Eligibility Criteria

• Age: 18 Years - 100 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with pulmonary fibrosis of any cause (idiopathic, related to connective tissue disease \[e.g., rheumatoid arthritis, systemic sclerosis/scleroderma, dermato-/polymyositis, sjogren's syndrome\], familial or genetic) or the primary supporter/caregiver of a patient with pulmonary fibrosis

You may qualify if:

• Anyone who self-reports a diagnosis of pulmonary fibrosis and is over 18 years of age will be included in the Registry.
• Anyone who self-reports being a primary supporter or caregiver of someone living with pulmonary fibrosis and is over the age of 18 will be included in the Registry.
• Whoever consents to be enrolled in the Registry will presumably be able to read and write in English.

Sponsors & Collaborators

• National Jewish Health: lead
• Pulmonary Fibrosis Foundation: collaborator
• Patient-Centered Outcomes Research Institute: collaborator

Study Sites (1)

National Jewish Health Interstitial Lung Disease Program

Denver, Colorado, 80206, United States

Location

MeSH Terms

Conditions

Pulmonary Fibrosis; Lung Diseases, Interstitial; Connective Tissue Diseases; Idiopathic Pulmonary Fibrosis

Condition Hierarchy (Ancestors)

Lung Diseases; Respiratory Tract Diseases; Fibrosis; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Skin and Connective Tissue Diseases

Study Officials

• Jeff Swigris, DO, MS

  National Jewish Health

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: PROSPECTIVE
• Target Duration: 20 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor of Medicine

Study Record Dates

• First Submitted: August 31, 2013
• First Posted: September 5, 2013
• Study Start: August 1, 2013
• Primary Completion: March 10, 2019
• Study Completion: March 10, 2019
• Last Updated: March 13, 2019

Record last verified: 2019-03

Locations

US (1)