Lessons learned from hemolytic uremic syndrome registries: recommendations for implementation

Table 1. 10 selected HUS registries

Reg. codes	Name (References)	Starting year	Country	Current situation	Patient number
Reg.1	Oklahoma TTP-HUS Registry [34,35,36]	1989	US	NA	434 (to 2015)
Reg.2*	International Registry of recurrent and familial HUS/TTP [37,38,39]	1996	Italy	Active	1200 (to 2016)
Reg.3*	French Registry of aHUS in children [40]	2005	France	Active	375 (to 2013)
Reg.4*	Italian Registry of Hemolytic Uremic Syndrome [41, 42]	2005	Italy	Active	NA
Reg.5	International Registry and biorepository for TMA [31, 43]	2007	US	Inactive	NA
Reg.6*	TTP/TMA Registry [44]	2011	Australia	Active	NA
Reg.7	German STEC-HUS Registry [45, 46]	2011	Germany	NA	631(to 2012)
Reg.8*	Atypical Hemolytic-Uremic Syndrome Registry [30, 47]	2012	US	Active	852 (to 2019)
Reg.9*	Turkish pediatric aHUS Registry [20, 48]	2013	Turkey	Active	146 (to 2017)
Reg.10	TMA Registry of North America (TRNA) [33]	2013	US	NA	NA

*From Orphanet
aHUS: Atypical Hemolytic Uremic Syndrome; HUS: Hemolytic Uremic Syndrome; NA: Not Available information; Reg.: Registry; STEC-HUS: Shiga toxin-producing E. coli HUS; TMA: Thrombotic Microangiopathy; TTP: Thrombotic Thrombocytopenic Purpura

ISSN: 1750-1172