Precision Diagnosis and Care for Families With Pulmonary Fibrosis in Ireland

Plain-language summary

This study aims to improve precise diagnosis and care for families in Ireland affected by pulmonary fibrosis (scarring of lung tissue), using genetic testing and various lung assessments. Patients with a multidisciplinary diagnosis of fibrotic interstitial lung disease, with a family history or meeting certain rheumatologic criteria, may take part. It is a non-phase study that is currently recruiting.

The summary above is a plain-language rendering of the official record. The original English title is shown for reference.

Trial details

Phase

N/A

Status

Recruiting

Sponsor

Royal College of Surgeons, Ireland

Intervention

Six minute walk test (6MWT), Computer-tomography of the thorax (CT Thorax), Quality of life questionnaires., Genetic Testing, Spirometry, Serology, Other Quality of Life Questionnaires, PatientMPower Home Monitoring App

Start date

9/28/2021

Estimated completion

4/1/2028

Countries

Ireland

Related genes

Locations

• Dublin, Ireland

Eligibility criteria

Criteria are reproduced from the ClinicalTrials.gov record in the original English. Only the trial team can determine eligibility.

Inclusion Criteria:

* Able and willing to give written informed consent.
* An MDT diagnosis of fibrotic ILD which fall into one of the following three catagories;

  1. Have a multidisciplinary team (MDT) diagnosis of a fibrotic interstitial lung disease, reporting one or more relatives with a fibrotic form of ILD
  2. Have a MDT diagnosis of IPF in accordance with consensus criteria, ATS, ERS, JRS, ALAT guidelines without a family history of pulmonary fibrosis.
  3. Meet the American College of Rheumatology/European League Against Rheumatism criteria for rheumatoid arthritis, scleroderma, Sjogren's syndrome, idiopathic inflammatory myopathy and systemic lupus erythematosus.

Exclusion Criteria:

* Currently participating in an interventional clinic trial.
* Change in clinical phenotype from initial radiological diagnosis to screening.
* Acute or chronic hypersensitivity pneumonitis with consensus criteria (appropriate exposure history, radiological features ± avian and fungal precipitins).
* Asbestosis (appropriate occupational history and radiological evidence of asbestos exposure)
* Life expectancy for any disease, including ILD \<12 months (investigator assessment)
* Major extrapulmonary physiological restriction (e.g. chest wall abnormality, large pleural effusion)