Table 1.

Major reported clinical phenotypes of HA20

Karri et al. 2024 (3)Elhani et al. 2024 (4)Shiraki et al. 2025 (21)Others (21, 23, 24, 25, 26); Multicenter cohort (27)
Demographics ​ ​ ​ ​ ​ 
# of patients 199 177 54 12 185 
# of families 130 NR 37 11 112 
Population East Asia, Turkey, Europe, and United States East Asia, Turkey, Europe, and United States Japan and Vietnam East Asia and Europe United States, Asia, Europe, South and Central America, and New Zealand 
Age of onset, years Mean 7 (0–39) Median 4 (0–35) Median 2.8 (0–27),
60% before age 5 
Mean 4.8 (0–26)
N = 10 
Median 3.3 (0.04–33) 
Female NR 62% 54% 58.3% 55.2% 
Autoinflammation ​ ​ ​ ​ ​ 
Oral ulcers 68% 69% 78% 75% 72.2% 
Genital ulcers 37% 36% 35% 42% 32% 
Rash 42% 43% 50% 42% 43.8% 
Arthritis/arthralgia 34% 31% 37% 50% 46.7% 
Ocular 8.5% 8% 11% 17% 6% 
Gastrointestinal, IBD-like 39% 46% 76% 58% 58.6% (27.7% with intestinal ulcers) 
Vascular disease 11% 8% 4% 17% NR 
Neurologic disease 11.5% 10% 18.5% 8% 16.6% 
Pathergy 1.5% NR NR NR NR 
Recurrent fever 49% 54% 85% 58% 63.3% 
Lung disease 6% 6% NR 20.2% 
HLH/cytokine storm NR NR NR 
Autoimmunity ​ ​ ​ ​ ​ 
Autoantibodies 72% NR NR (all autoimmunity 28%) 83% ANA 37.2%, antithyroid antibodies 15.9%, Coombs 25%, and other autoantibodies 35.9% 
Thyroid 14% 14% 17% 17% 17.6% 
T1DM 4% 3% 2% 17% 
Liver disease 14.5% 10% 15% 17% 28.9% 
SLE 7% 9% 6% NR 
Cytopenias 20% 6% 7% 42% 56.6% 
Lymphoproliferation 
ALPS-like 1% NR NR NR NR 
Lymphoma 1% NR 2% NR 
Lymphadenopathy 16% NR 15% NR 32% 
Immunodeficiency 
CVID 1.5% All immunodeficiency 5% NR NR 
Humoral deficiency 5.5% NR 8% 
Recurrent infection 9% NR NR 35.5% 
Karri et al. 2024 (3)Elhani et al. 2024 (4)Shiraki et al. 2025 (21)Others (21, 23, 24, 25, 26); Multicenter cohort (27)
Demographics ​ ​ ​ ​ ​ 
# of patients 199 177 54 12 185 
# of families 130 NR 37 11 112 
Population East Asia, Turkey, Europe, and United States East Asia, Turkey, Europe, and United States Japan and Vietnam East Asia and Europe United States, Asia, Europe, South and Central America, and New Zealand 
Age of onset, years Mean 7 (0–39) Median 4 (0–35) Median 2.8 (0–27),
60% before age 5 
Mean 4.8 (0–26)
N = 10 
Median 3.3 (0.04–33) 
Female NR 62% 54% 58.3% 55.2% 
Autoinflammation ​ ​ ​ ​ ​ 
Oral ulcers 68% 69% 78% 75% 72.2% 
Genital ulcers 37% 36% 35% 42% 32% 
Rash 42% 43% 50% 42% 43.8% 
Arthritis/arthralgia 34% 31% 37% 50% 46.7% 
Ocular 8.5% 8% 11% 17% 6% 
Gastrointestinal, IBD-like 39% 46% 76% 58% 58.6% (27.7% with intestinal ulcers) 
Vascular disease 11% 8% 4% 17% NR 
Neurologic disease 11.5% 10% 18.5% 8% 16.6% 
Pathergy 1.5% NR NR NR NR 
Recurrent fever 49% 54% 85% 58% 63.3% 
Lung disease 6% 6% NR 20.2% 
HLH/cytokine storm NR NR NR 
Autoimmunity ​ ​ ​ ​ ​ 
Autoantibodies 72% NR NR (all autoimmunity 28%) 83% ANA 37.2%, antithyroid antibodies 15.9%, Coombs 25%, and other autoantibodies 35.9% 
Thyroid 14% 14% 17% 17% 17.6% 
T1DM 4% 3% 2% 17% 
Liver disease 14.5% 10% 15% 17% 28.9% 
SLE 7% 9% 6% NR 
Cytopenias 20% 6% 7% 42% 56.6% 
Lymphoproliferation 
ALPS-like 1% NR NR NR NR 
Lymphoma 1% NR 2% NR 
Lymphadenopathy 16% NR 15% NR 32% 
Immunodeficiency 
CVID 1.5% All immunodeficiency 5% NR NR 
Humoral deficiency 5.5% NR 8% 
Recurrent infection 9% NR NR 35.5% 

NR, not reported; HLH, hemophagocytic lymphohistiocytosis; T1DM, type 1 diabetes mellitus; ALPS, autoimmune lymphoproliferative syndrome; CVID, common variable immunodeficiency; +, reported but frequency not known.

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