Pulmonary Fibrosis Contact Registry: 20-year Observational Study to Collect Data on Patients and Caregivers


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shutterstock_134672633 A registry study called the “Pulmonary Fibrosis Contract Registry” is being conducted by the Pulmonary Fibrosis Foundation in collaboration with the Patient Centered Outcome Research Institute (ClinicalTrials.gov Identifier: NCT01935726)

This is an observational prospective study that will run for 20 years with the goal of registering and securely storing contact information of patients or primary caregivers of people with Pulmonary Fibrosis so they can be informed about ongoing studies and opportunities to enroll in research trials. The study is also supported by the National Jewish Health.

Clinical trials investigating effective treatments for people with Pulmonary Fibrosis (PF) have only made modest progress so far, highlighting it as a mainstream condition that is still in need of deeper research. The Pulmonary Contact Registry is determined to collect, analyze and disseminate data of different phenotypes in patients with PF. The information will be securely stored and will keep contact information of patients who may wish to take part in studies they are found eligible for.

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The data in the Registry will also provide researchers with patient information so they can formulate study hypotheses and develop study protocols by being able to access available patients who meet study entry criteria.

The collection of patients’ and primary caregivers’ information began in August 2013 and the final data collection for primary outcome measures is expected in January 2040. The PF Contact Registry is estimating to enroll 50,000 patients with a diagnosis of Pulmonary Fibrosis aged over 18 years. Primary caregivers of patients with pulmonary fibrosis aged over 18 years can also take part in the study.

Specifically, the study is looking to recruit pulmonary fibrosis patients of any cause including 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.

To enroll in the study, eligible participants must provide informed consent and fill out self-report questionnaires; this information will not be stored by the Registry Data Coordinating Center (DCC) or by the study coordinator. Subjects may obtain the intake questionnaire, complete it, and submit it four different ways. More information can be found on the United States Clinical Trials website at: https://clinicaltrials.gov/ct2/show/NCT01935726?term=pulmonary+fibrosis&rank=1&submit_fld_opt=