Table 2.
Regional registries: selected list.
| Region | Year initiated | Objective | ALS cases (N) |
|---|---|---|---|
| Swabia, Germany (26) | 2008 | Incidence, patient and disease characteristics, natural history of ALS | 438 (2014) |
| Ireland (The Irish ALS Register) (27) | 1994 | Incidence, prevalence, clinical features; associated DNA bank | 2,128 (1995–2017) |
| Southeast England ALS Register (SEALS) (28) | 2002 | Incidence, patient and disease characteristics, natural history of ALS | 138 (2002–2006) |
| Puglia, Italy (Sclerosi Laterale Amiotrofica- Puglia, SLAP) (29) | 1997 | Incidence, prevalence, disease characteristics of ALS | 130 (1998–1999) |
| Piedmont and Aosta Valley, Italy (PARALS) (30) | 1995 | Incidence, prevalence, disease characteristics of ALS | 2,702 (2014) |
| Lombardy, Italy (31) | 1998 | Incidence, prevalence, disease characteristics of ALS | 517 (1998–2002) |
| Scotland (Clinical Audit Research and Evaluation of MND CARE-MND) (32) | 1989 | Clinical and epidemiological features of MND. Prospectively identify incident patients | 406 (2015–2016 alone) |
| Spain (Sant Pau-MND (SP-MND)) (33) | 2004 | Incidence, prevalence, disease characteristics of ALS | 294 (2004–2015) |
| European Union, EU Wide Initiative (EURALS, ENCALS, TRICALS) | 1990 | Incidence, prevalence, disease characteristics of ALS | 5,403 (2019) |