Disease Directory Sandhoff Disease
Metabolic

Sandhoff Disease

Also known as: GM2 gangliosidosis type II, hexosaminidase A and B deficiency, HEXB deficiency

Prevalence

1-9 per 100,000 (Orphanet)

Onset

Infantile, Juvenile, Adult

Type

Autosomal recessive genetic

Gene

HEXB

About Sandhoff Disease

Sandhoff disease is a lysosomal storage disorder caused by mutations in the HEXB gene, leading to deficiency of both beta-hexosaminidase A and B enzymes. This results in accumulation of GM2 gangliosides and related glycolipids in neurons, causing progressive neurological destruction. Unlike Tay-Sachs (which affects only HexA), Sandhoff disease also affects non-neural tissues, causing visceral involvement including hepatosplenomegaly.

Common Clinical Features

Progressive neurological deterioration Cherry-red macular spot Hepatosplenomegaly Hypotonia Seizures Exaggerated startle response Blindness

Clinical Trial Eligibility Tips

What to know before applying to Sandhoff Disease trials.

Hexosaminidase A and B enzyme activity levels must both be documented for trial eligibility confirmation

Sandhoff and Tay-Sachs are biologically similar — some GM2 gangliosidosis trials enroll both; confirm which forms are accepted

Substrate reduction therapy with miglustat has been studied — prior SRT use may be an exclusion criterion in some trials

Infantile-onset patients have a narrow enrollment window; contact trial coordinators early after diagnosis

Patient Resources

Patient Organization

National Tay-Sachs & Allied Diseases Association

Visit website ↗

Natural History Registry

NTSAD Disease Registry

Join registry ↗

Orphanet

European reference resource for rare diseases (ORPHA:796)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

Search NORD ↗

Find recruiting Sandhoff Disease trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Sandhoff Disease. Updated daily.

Related Rare Diseases