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Table 4 Table of national ILD registries (excluding IPF only registries)

From: Australasian interstitial lung disease registry (AILDR): objectives, design and rationale of a bi-national prospective database

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
  1. Abbreviations: AILDR Australasian ILD registry, CARE-PF The Canadian Registry for Pulmonary Fibrosis, PFF-PR Pulmonary Fibrosis Foundation Patient Registry, REGIS Romanian Registry for Interstitial Lung Diseases, UIP Usual Interstitial Pneumonia, RIPID Registry of Diffuse Infiltrative Pulmonary Diseases, RAPID Rheumatoid Arthritis patients at Risk for ILD, RA Rheumatoid Arthritis, EUSTAR European Scleroderma Trials and Research Group, SSc Systemic Sclerosis, SASR South Australia Scleroderma Register, BRILL British Rheumatoid Interstitial Lung network, BTS British Thoracic Society
  2. aTrial identifier where available
  3. bLimited disease on CT
  4. cExtensive disease on CT