Pulmonary Fibrosis Contact Registry
Completed
Conditions studied: Pulmonary Fibrosis of Any Cause, Primary Supporters/Caretakers of Patients With Pulmonary Fibrosis
In brief
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.
Key facts
- Study ID
- NCT01935726
- Run by
- National Jewish Health
- People needed
- 300
- Starts
- 2013-08-01
- Expected to finish
- 2019-03-10
- Last updated by the study team
- 2019-03-13
Who can join
Age: 18 and older, up to 100. Sex: any. Healthy volunteers: accepted.
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.
You may not qualify if…
- Failure to meet inclusion criteria
Where it is running
- National Jewish Health Interstitial Lung Disease Program — Denver, Colorado, United States
Full record on ClinicalTrials.gov
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