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Lysosomal Acid Lipase Deficiency in Risk Groups

A multicenter real-world observational study of the prevalence, diagnostic pathways, and clinical characteristics of lysosomal acid lipase deficiency in pediatric and adolescent risk groups in the Russian Federation (HELIOS)

Condition(s)Lysosomal Acid Lipase Deficiency
StatusRecruiting
Study typeObservational
SummaryA multicenter real-world observational study of the prevalence, diagnostic pathways, and clinical characteristics of lysosomal acid lipase deficiency in pediatric and adolescent risk groups in the Russian Federation (HELIOS)
Who can participateInclusion Criteria Age 12 months to 18 years (infantile form is out of scope for the analytical component); Patients not previously evaluated for LAL-D (test-naïve); Presence of at least one (1) of the following major criteria: Unexplained hepatomegaly and/or splenomegaly persisting ≥3 months; Persistent hypertransaminasemia: ALT or AST ≥ 1.5× upper limit of normal (ULN) after exclusion of common metabolic/infectious causes; Atherogenic dyslipidemia: elevated total cholesterol (TC), elevated LDL-C and/or reduced HDL-C (LDL-C \>95th percentile for age and sex or HDL-C \<5th percentile); triglycerides not markedly elevated. Presence of at least two (2) of the following minor criteria: Chronic diarrhea or intermittent unstable bowel movements; Abdominal pain and/or bloating; Loss of appetite;
SexAll
Lead sponsorAstraZeneca
LocationsNizhny Novgorod, Russia; Petrozavodsk, Russia; Rostov-on-Don, Russia; Saint Petersburg, Russia
Start date2026-02-25
NCT IDNCT07455864
Official listinghttps://clinicaltrials.gov/study/NCT07455864

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