The Calgary Familial Pulmonary Fibrosis Cohort: Establishing a Pilot Prospective Study for Genetic and Environmental Risk Profiling

Summary

We think that family members of people with a lung disease called interstitial lung disease (ILD) may already have early signs of lung changes, even if they don’t have any symptoms. We also believe that patients with a strong family history of ILD, a diagnosis called familial pulmonary fibrosis (FPF), may share certain genes or have been exposed to things in their environment that increase their risk of developing ILD. We are aiming to combine genetic testing, lung scans, and information about environmental exposures from patients with ILD, their family members ("at-risk relatives") and a control population all in one study. This will help us begin to understand what puts people at risk for this lung disease.

Eligibility

Currently recruiting participants: Yes

Eligible ages: 50 to 100

Accepts healthy participants: Yes

Inclusion criteria:

The following people are eligible:

Participants with familial pulmonary fibrosis (15 participants):
1. >18 years of age at time of consent
2. Ability to provide informed consent
3. Diagnosis of fibrotic ILD—including idiopathic pulmonary fibrosis (IPF), fibrotic hypersensitivity. pneumonitis (fHP), idiopathic nonspecific interstitial pneumonia (iNSIP), or unclassifiable ILD
4. Self-reported family history of interstitial lung disease or pulmonary fibrosis in a first degree relative (sibling, parent, child)

At-risk relatives (30 participants):
1. Aged ≥50 at time of consent
2. Ability to provide informed consent
3. No known chronic respiratory disease
4. First degree relative of participant with FPF

Controls (15 participants):
1. Aged ≥50 at time of consent
2. Friend, spouse or partner of at-risk relatives or patient
3. Ability to provide informed consent
4. No known chronic respiratory disease

Participate

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Method of contact

Collection of personal information
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Additional information

Contact information

Dr. Amanda Grant-Orser

Principal investigator:

Amanda Grant-Orser

Clinical trial:

No

REB-ID:

REB25-1110