Atypical hemolytic uremic syndrome (aHUS) is a thrombotic microangiopathy typically characterized by anemia, thrombocytopenia, and end-organ injury. aHUS occurs due to endothelial injury resulting from overactivation of the alternative pathway of the complement system. The etiology of the dysregulated complement system is either a genetic mutation in 1 or more complement proteins or an acquired deficiency due to autoantibodies. Over the past decade, advancements in our understanding of the role of complement in the pathophysiology of aHUS as well as the availability of anticomplement drugs has been a game-changer for our patients. These drugs have revolutionized the clinical course, outcome, and prognosis of this disease. Therefore, all patients in whom aHUS is suspected should undergo testing for complement genetic variants and autoantibodies. In approximately 30% to 40% of patients, a genetic variant of uncertain significance (VUS) may be identified. Such patients should undergo further testing to define the significance of the VUS. A combination of antigenic, functional, and biomarker analyses can assist in establishing the significance of the variants and thereby define the etiology in most patients. These analyses will also help to determine the duration of treatment based on the individual's genetic alteration. This review aims to shed light on the diagnosis and management of aHUS and discusses how to stratify patients to determine who can safely discontinue anticomplement therapy.

1.
George
JN
,
Nester
CM.
Syndromes of thrombotic microangiopathy
.
N Engl J Med
.
2014
;
371
(
7
):
654
-
666
.
2.
Maisons
V
,
Duval
A
,
Mesnard
L
, et al
;
MATRIX Consortium Group
.
Assessment of epidemiology and outcomes of adult patients with kidney-limited thrombotic microangiopathies
.
Kidney Int
.
2024
;
105
(
5
):
1100
-
1112
.
3.
Schwimmer
J
,
Nadasdy
TA
,
Spitalnik
PF
,
Kaplan
KL
,
Zand
MS.
De novo thrombotic microangiopathy in renal transplant recipients: a comparison of hemolytic uremic syndrome with localized renal thrombotic microangiopathy
.
Am J Kidney Dis
.
2003
;
41
(
2
):
471
-
479
.
4.
Java
A
,
Atkinson
J
,
Salmon
J.
Defective complement inhibitory function predisposes to renal disease
.
Annu Rev Med
.
2013
;
64
:
307
-
324
.
5.
Liszewski
MK
,
Java
A
,
Schramm
EC
,
Atkinson
JP.
Complement dysregulation and disease: insights from contemporary genetics
.
Annu Rev Pathol
.
2017
;
12
:
25
-
52
.
6.
Nester
CM
,
Feldman
DL
,
Burwick
R
, et al.
An expert discussion on the atypical hemolytic uremic syndrome nomenclature-identifying a road map to precision: a report of a National Kidney Foundation Working Group
.
Kidney Int
.
2024
;
106
(
3
):
326
336
.
7.
Rodríguez de Córdoba
S
,
Hidalgo
MS
,
Pinto
S
,
Tortajada
A.
Genetics of atypical hemolytic uremic syndrome (aHUS)
.
Semin Thromb Hemost
.
2014
;
40
(
4
):
422
-
430
.
8.
Dragon-Durey
M-A
,
Sethi
S-K
,
Bagga
A
, et al.
Clinical features of anti- factor H autoantibody-associated hemolytic uremic syndrome
.
J Am Soc Nephrol
.
2010
;
21
(
12
):
2180
-
2187
.
9.
Zhang
Y
,
Ghiringhelli Borsa
N
,
Shao
D
, et al.
Factor H autoantibodies and complement-mediated diseases
.
Front Immunol
.
2020
;
11
:
607211
.
10.
Puraswani
M
,
Khandelwal
P
,
Saini
H
, et al.
Clinical and immunological profile of anti-factor H antibody associated atypical hemolytic uremic syndrome: a nationwide database
.
Front Immunol
.
2019
;
10
:
1282
.
11.
Loirat
C
,
Frémeaux-Bacchi
V.
Anti-factor H autoantibody-associated hemolytic uremic syndrome: the earlier diagnosed and treated, the better
.
Kidney Int
.
2014
;
85
(
5
):
1019
-
1022
.
12.
Józsi
M
,
Strobel
S
,
Dahse
H-M
, et al.
Anti factor H autoantibodies block C-terminal recognition function of factor H in hemolytic uremic syndrome
.
Blood
.
2007
;
110
(
5
):
1516
-
1518
.
13.
Noris
M
,
Caprioli
J
,
Bresin
E
, et al.
Relative role of genetic complement abnormalities in sporadic and familial aHUS and their impact on clinical phenotype
.
Clin J Am Soc Nephrol
.
2010
;
5
(
10
):
1844
-
1859
.
14.
Sansbury
FH
,
Cordell
HJ
,
Bingham
C
, et al.
Factors determining penetrance in familial atypical haemolytic uraemic syndrome
.
J Med Genet
.
2014
;
51
(
11
):
756
-
764
.
15.
Licht
C
,
Al-Dakkak
I
,
Anokhina
K
, et al.
Characterization of patients with aHUS and associated triggers or clinical conditions: a global aHUS registry analysis
.
Nephrology (Carlton)
.
2024
;
29
(
8
):
519
-
527
.
16.
Burwick
RM
,
Moyle
K
,
Java
A
,
Gupta
M.
Differentiating hemolysis, elevated liver enzymes, and low platelet count syndrome and atypical hemolytic uremic syndrome in the postpartum period
.
Hypertension
.
2021
;
78
(
3
):
760
-
768
.
17.
Java
A
,
Apicelli
AJ
,
Liszewski
MK
, et al.
The complement system in COVID-19: friend and foe?
JCI Insight
.
2020
;
5
(
15
).
18.
Genest
DS
,
Patriquin
CJ
,
Licht
C
,
John
R
,
Reich
HN.
Renal thrombotic microangiopathy: a review
.
Am J Kidney Dis
.
2023
;
81
(
5
):
591
-
605
.
19.
Formeck
C
,
Swiatecka-Urban
A.
Extra-renal manifestations of atypical hemolytic uremic syndrome
.
Pediatr Nephrol
.
2019
;
34
(
8
):
1337
-
1348
.
20.
Brocklebank
V
,
Wood
KM
,
Kavanagh
D.
Thrombotic microangiopathy and the kidney
.
Clin J Am Soc Nephrol
.
2018
;
13
(
2
):
300
-
317
.
21.
Goodship
TH
,
Cook
HT
,
Fakhouri
F
, et al
;
Conference Participants
.
Atypical hemolytic uremic syndrome and C3 glomerulopathy: conclusions from a “Kidney Disease: Improving Global Outcomes” (KDIGO) controversies conference
.
Kidney Int
.
2017
;
91
(
3
):
539
-
551
.
22.
Raina
R
,
Sethi
SK
,
Dragon-Durey
M-A
, et al.
Systematic review of atypical hemolytic uremic syndrome biomarkers
.
Pediatr Nephrol
.
2022
;
37
(
7
):
1479
-
1493
.
23.
Richards
S
,
Aziz
N
,
Bale
S
, et al
;
ACMG Laboratory Quality Assurance Committee
.
Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology
.
Genet Med
.
2015
;
17
(
5
):
405
-
424
.
24.
Java
A.
Peri- and post-operative evaluation and management of atypical hemolytic uremic syndrome (aHUS) in kidney transplantation
.
Adv Chronic Kidney Dis
.
2020
;
27
(
2
):
128
-
137
.
25.
Java
A
,
Pozzi
N
,
Love-Gregory
LD
, et al.
A multimodality approach to assessing factor I genetic variants in atypical hemolytic uremic syndrome
.
Kidney Int Rep
.
2019
;
4
(
7
):
1007
-
1017
.
26.
Ren
Z
,
Perkins
SJ
,
Love-Gregory
L
,
Atkinson
JP
,
Java
A.
Clinicopathologic implications of complement genetic variants in kidney transplantation
.
Front Med (Lausanne)
.
2021
;
8
:
775280
.
27.
Martín Merinero
H
,
Zhang
Y
,
Arjona
E
, et al.
Functional characterization of 105 factor H variants associated with aHUS: lessons for variant classification
.
Blood
.
2021
;
138
(
22
):
2185
-
2201
.
28.
Wong
EKS
,
Hallam
TM
,
Brocklebank
V
, et al.
Functional characterization of rare genetic variants in the N-terminus of complement factor H in aHUS, C3G, and AMD
.
Front Immunol
.
2020
;
11
:
602284
.
29.
de Jong
S
,
de Breuk
A
,
Bakker
B
, et al.
Functional analysis of variants in complement factor I identified in age-related macular degeneration and atypical hemolytic uremic syndrome
.
Front Immunol
.
2021
;
12
:
789897
.
30.
Merinero
HM
,
García
SP
,
García-Fernández
J
,
Arjona
E
,
Tortajada
A
,
Rodríguez de Córdoba
S.
Complete functional characterization of disease-associated genetic variants in the complement factor H gene
.
Kidney Int
.
2018
;
93
(
2
):
470
-
481
.
31.
Legendre
CM
,
Licht
C
,
Muus
P
, et al.
Terminal complement inhibitor eculizumab in atypical hemolytic-uremic syndrome
.
N Engl J Med
.
2013
;
368
(
23
):
2169
-
2181
.
32.
Barbour
T
,
Scully
M
,
Ariceta
G
, et al
;
311 Study Group Members
.
Long-term efficacy and safety of the long-acting complement C5 inhibitor ravulizumab for the treatment of atypical hemolytic uremic syndrome in adults
.
Kidney Int Rep
.
2021
;
6
(
6
):
1603
-
1613
.
33
33.
Ariceta
G
,
Dixon
BP
,
Kim
SH
, et al
;
312 Study Group
.
Corrigendum to “The long-acting C5 inhibitor, ravulizumab, is effective and safe in pediatric patients with atypical hemolytic uremic syndrome naïve to complement inhibitor treatment
.”
Kidney Int
.
2021
;
100
:
225
-
237
.
Kidney Int
.
2023
;
104
(
1
):
205
.
34.
Fakhouri
F
,
Fila
M
,
Hummel
A
, et al.
Eculizumab discontinuation in children and adults with atypical hemolytic-uremic syndrome: a prospective multicenter study
.
Blood
.
2021
;
137
(
18
):
2438
-
2449
.
35.
Ariceta
G.
Optimal duration of treatment with eculizumab in atypical hemolytic uremic syndrome (aHUS)-a question to be addressed in a scientific way
.
Pediatr Nephrol
.
2019
;
34
(
5
):
943
-
949
.
36.
Bouwmeester
RN
,
Duineveld
C
,
Wijnsma
KL
, et al.
Early eculizumab withdrawal in patients with atypical hemolytic uremic syndrome in native kidneys is safe and cost-effective: results of the CUREiHUS study
.
Kidney Int Rep
.
2023
;
8
(
1
):
91
-
102
.
37.
Duineveld
C
,
Bouwmeester
R
,
van der Heijden
JW
, et al
;
Dutch aHUS Working Group
.
Outcome of atypical haemolytic uraemic syndrome relapse after eculizumab withdrawal
.
Clin Kidney J
.
2021
;
14
(
8
):
1939
-
1945
.
38.
McNamara
LA
,
Topaz
N
,
Wang
X
,
Hariri
S
,
Fox
L
,
MacNeil
JR.
High risk for invasive meningococcal disease among patients receiving eculizumab (Soliris) despite receipt of meningococcal vaccine
.
MMWR Morb Mortal Wkly Rep
.
2017
;
66
(
27
):
734
-
737
.
39.
Antonucci
L
,
Thurman
JM
,
Vivarelli
M.
Complement inhibitors in pediatric kidney diseases: new therapeutic opportunities
.
Pediatr Nephrol
.
2024
;
39
(
5
):
1387
-
1404
.
40.
Kavanagh
D
,
Greenbaum
LA
,
Bagga
A
, et al.
Design and rationale of the APPELHUS phase 3 open-label study of factor B inhibitor iptacopan for atypical hemolytic uremic syndrome
.
Kidney Int Rep
.
2023
;
8
(
7
):
1332
-
1341
.
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