Table 1– Proposed data content for a global idiopathic pulmonary fibrosis (IPF) registry
Essential (core) content
 Baseline data
  Demographics (age, sex, race and ethnicity)
  Smoking (number of cigarettes per day and year started/stopped smoking)
  Pulmonary function testing
  Resting pulse oximetry
  6MWD and exertional pulse oximetry
  Chest imaging
  Questionnaires at baseline and follow-up#
   Quality of life: SGRQ [8]
   Dyspnoea: UCSD SOBQ [9]
  Diagnostic criteria
 Longitudinal data
  Pulmonary function testing
  Resting pulse oximetry
  6MWD and exertional pulse oximetry
  Chest imaging
  Questionnaires at baseline and follow-up#
   Quality of life: SGRQ [8]
   Dyspnoea: UCSD SOBQ [9]
  Date of death
  Date of lung transplant
  Date and causes of hospitalisation
Interventional data
  Pulmonary rehabilitation (date started/stopped and number of sessions attended)
  Oxygen (start date and flow rate)
  Selected medications (date started/stopped, dosage, adverse events and reason for discontinuation)
  • 6MWD: 6-min walk distance; SGRQ: St George’s Respiratory Questionnaire; UCSD SOBQ: University of California San Diego Shortness of Breath Questionnaire. #: the SGRQ and UCSD SOBQ are currently the best questionnaires for use in a prospective IPF registry [8, 9], although future studies may support disease-specific instruments or other alternatives. This recommendation is based on their ease of administration, their frequent use in IPF trials and initial studies that suggest adequate performance characteristics of these questionnaires in IPF [1012].