The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods.
Wang BR, Edwards R, Freiheit EA, Ma Y, Burg C, de Andrade J, Lancaster L, Lindell K, Nathan SD, Raghu G, Gibson K, Gulati M, Mason W, Noth I, Schmidt B, Spino C, Staszak S, Stauffer J, Wolters PJ, Cosgrove GP, Flaherty KR. The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods. Annals Of The American Thoracic Society 2020, 17: 1620-1628. PMID: 32776789, DOI: 10.1513/annalsats.202001-035sd.Peer-Reviewed Original ResearchConceptsInterstitial lung diseasePatient RegistryClinician accessLarge multicenter registryMean diffusing capacityPositive smoking historyPercent of patientsIdiopathic pulmonary fibrosisTime of enrollmentIndividuals 18 yearsMulticenter registrySmoking historyPulmonary fibrosisSupplemental oxygenVital capacityLung diseaseMean agePatient populationAntifibrotic therapyApplicable biomarkersClinical informationDiffusing capacityPatientsClinical sitesRegistry