Table 4 Table of national ILD registries (excluding IPF only registries)
Country | Registry Name (www.clinicaltrials.gov Identifier)a | Data Collection | Population (and size) | Mean FVC, % predicted (SD or range) | Mean DLCO (%predicted) |
|---|---|---|---|---|---|
Australia and New Zealand | AILDR | May 2016 - current | ILDs inc. IPF (> 1300) | 79.1 (±20.4) | 58.5 (±17.9) |
Canada | CARE-PF [14] | 2016 - current | Fibrotic ILDs inc. IPF (> 3000) | 74.5 (±20.3) | 56.7 (±20.1) |
United States | PFF-PR [15] (NCT02758808) | Aug 2018 - current | ILDs inc. IPF (> 1400) | 68 (±20) | 45 (±18) |
Germany | EXCITING registry [16] (NCT02645968) | Oct 2014 - current | ILDs inc. IPF (> 200) | 72 | 51 |
Romania | REGIS [17] | 2014–2017 | ILDs inc. IPF (> 100) | 94.1 | 78.1 |
Turkey | TURK-UIP (NCT02821039) | June 2016 – July 2019 | ILDs with UIP (> 1600) | Not published | Not published |
India | ILD-India [18] | March 2012 – June 2015 | ILDs inc. IPF (> 1000) | 57.2 (±23.3) | 45.4 (±41.6) |
Japan | JIIPS Registry [19] (NCT03041623) | Dec 2016 – March 2021 | ILDs inc. IPF (> 860) | 82 (69.1–93.9) | 67.1 (53.5–83) |
Italy | RIPID [20] | 1997–2005 | ILDs (> 3100) | Not published | Not published |
Greece | [21] | Jan 2004 – Dec 2004 | ILDs inc. IPF (> 960) | Not published | Not published |
Seoul | Interstitial Lung Disease Registry Construction (NCT03238989) | Jan 2014 – Dec 2023 | ILDs inc. IPF (Est. 300) | Not published | Not published |
New Mexico | New Mexico Interstitial Lung Disease Registry [22] | Oct 1988-Sept 1990 | ILDs inc. IPF (> 450) | 69.1 (±21.6) | Not published |
Saudi Arabia | [23] | 2008–2011 | ILDs inc. IPF (> 300) | 66.1(±20.8) | 44.4 (±19.5) |
Belgium (Flanders) | [24] | 1992–1996 | ILDs inc. IPF (> 360) | 82 (±22) | 77 (±19) |
Denmark | [25] | Apr 2003 – Mar 2009 | ILDs inc. IPF (> 430) | 71.3 (±22.2) | 48.5 (±19.0) |
Denmark | DANILDA | Jan 2018 – current | ILDs inc. IPF (> 250) | Not published | Not published |
Spain | RENIA [26] | 1998–2000 | ILDs inc. IPF (> 740) | Not published | Not published |
United States | IPF-PRO/ILD-PRO Registry (NCT01915511) | June 2016 - current | Progressive ILDs inc. IPF (est. 2000) | Not published | Not published |
United States | RAPID (NCT03297775) | June 2017 - current | RA and ILD inc. IPF (Est. 500) | Not published | Not published |
International | EUSTAR [27] | June 2004 - current | SSc inc. SSc-ILD (> 15,000) | 92.2 (±21.3) | 68.3 (±21.1) |
Australia | SASR [28] | 1993–2007 | Scleroderma (786) | Not published | Not published |
UK | BRILL [29] | 1987 - current | RA and ILD (230) | 101 (54–145)b 70 (44–117)c | 61 (33–106)b 52 (22–109)c |
UK | BTS [30] | Feb 2013 - current | Sarcoidosis (> 300) | 97 | 78.2 |
Europe | eurIPFreg (NCT02951416) | Sept 2009 - current | ILDs inc. IPF (> 1080) | Not published | Not published |