Table 1.
Currently active European vasculitis registries
| Registry details | Czech Republic | France | Ireland and the UK | Norway | Poland | Portugal | Spain |
|---|---|---|---|---|---|---|---|
| Name of the registry | Czech Registry of AAV | FVSG Registry | UKIVAS | NorVas | Polish Vasculitis Registry | Reuma.pt / Vasculitis | REVAS |
| Start date | 2009 | 1981 | 2010 | 2014 | 2015 | 2014 | 1990 |
| Type of vasculitis | AAV (to be extended) | All | All | All | All | All | All |
| Patients (n) | 850 | 3304 | 3710 | 399 | 650 | 574 | 1650 |
| Centres (n) | 16 | 101 | 51 | 8 | 13 | 9 | 25 |
| Medical specialties | Various | Various | Various | Rheumatology (nephrology invited) |
Various | Rheumatology | Internal medicine |
| Adapted for routine care | No | Yes (recent) | No | Yes | No | Yes | No |
| Features captured demographics | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Classification/diagnosis | EMA | CHCC | CHCC | CHCC and ACR | CHCC | CHCC and ACR | CHCC |
| Clinical features | Yes | Yes | Yes | No (BVAS) | Yes | Yes | Yes |
| BVAS | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| VDI | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| FFS | No | Yes | No | No | No | Yes | Yes |
| Laboratory | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Biopsy | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Treatment | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Adverse events | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Deaths | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Informed consent | Yes | Yes | Yes | Yes | Yes | Yes | Yes |
| Funding | Public/industry | Public | Public | Public | Public/industry | Industry | — |
| Biosampling | Yes | Yes | Yes | Yes (to be started) | Yes | Yes | No |
AAV, antineutrophil cytoplasmic antibody (ANCA)−associated vasculitis; ACR, American College of Rheumatology; BVAS, Birmingham Vasculitis Activity Score; CHCC, Chapel Hill Consensus Conference; EMA, European Medicines Agency; FFS, Five factor score; FVSG, French Vasculitis Study Group; ICD, International Classification of Diseases; NorVas, Norwegian Vasculitis & Biobank Registry; REVAS, “Registro Español de Vasculitis Sistemicas,” Spanish Registry of systemic vasculitides; UKIVAS, UK and Ireland Vasculitis Registry; VDI, Vasculitis Damage Index.