UnknownNot Applicable

Optimising Screening for Early Disease Detection in Familial Pulmonary Fibrosis

Netherlands200 participantsStarted 2021-06-16

Plain-language summary

In this study the prognostic value of the current screening parameters for familial pulmonary fibrosis (FPF) will be investigated by looking at the screenings of 200 first-degree relatives of patients with FPF. Also insight in the natural history of early FPF, and the necessary interval between screenings visits will be investigated.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Asymptomatic first-degree relative of patients with familial pulmonary fibrosis (FPF) Exclusion Criteria: * A previous diagnosis of interstitial lung disease (ILD) * Minors (aged \<18 years) * Pregnant Note: woman who are pregnant at the start of the study or at the time of the HRCT are not allowed to participate. If a participant gets pregnant at a later stage during the study, she will not be excluded from the study. To be able to account for a potential effect of pregnancy during data analysis, female participants can be asked if they are pregnant at every visit.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Characteristics of participants

Timeframe: Baseline

Forced Vital Capacity (FVC)

Timeframe: Baseline

Haemoglobulin-corrected carbon monoxide diffusing capacity (DLCOc)

Timeframe: Baseline

Total lung capacity (TLC)

Timeframe: Baseline

Biomarker levels

Timeframe: Baseline

Oxygen saturation in 6-minute walk test (6MWT)

Timeframe: Baseline

Distance (meters) in 6-minute walk test (6MWT)

Timeframe: Baseline

MUC5B genotype

Timeframe: Baseline

Trial details

NCT IDNCT05367349

SponsorSt. Antonius Hospital

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2025-06-16

Contact for this trial

Jan Grutters, Prof.

+31883201453 j.grutters@antoniusziekenhuis.nl

View on ClinicalTrials.gov More Pulmonary Fibrosis Idiopathic Familial trials

Plain-language summary

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

What they're measuring

Characteristics of participants

Timeframe: Baseline

Forced Vital Capacity (FVC)

Timeframe: Baseline

Haemoglobulin-corrected carbon monoxide diffusing capacity (DLCOc)

Timeframe: Baseline

Total lung capacity (TLC)

Timeframe: Baseline

Biomarker levels

Timeframe: Baseline

Oxygen saturation in 6-minute walk test (6MWT)

Timeframe: Baseline

Distance (meters) in 6-minute walk test (6MWT)

Timeframe: Baseline

MUC5B genotype

Timeframe: Baseline