Disease Directory Niemann-Pick Disease Type C
Metabolic

Niemann-Pick Disease Type C

Also known as: NPC, NPC1 deficiency, NPC2 deficiency, lysosomal cholesterol transport defect

Prevalence

1-9 per 100,000 (Orphanet)

Onset

Infantile, Childhood, Adolescent, Adult

Type

Autosomal recessive genetic

Gene

NPC1, NPC2

About Niemann-Pick Disease Type C

Niemann-Pick disease type C is a lysosomal lipid storage disorder caused by mutations in NPC1 (95% of cases) or NPC2, proteins required for intracellular cholesterol trafficking. Unesterified cholesterol and sphingolipids accumulate in lysosomes of neurons and visceral cells, causing progressive neurological deterioration including vertical supranuclear gaze palsy, ataxia, dementia, and seizures. Miglustat (Zavesca) is approved in Europe to slow neurological progression.

Common Clinical Features

Vertical supranuclear gaze palsy Cerebellar ataxia Dystonia Gelastic cataplexy Dementia Seizures Hepatosplenomegaly

Clinical Trial Eligibility Tips

What to know before applying to Niemann-Pick Disease Type C trials.

Plasma oxysterol (7-ketocholesterol, 3beta,5alpha,6beta-cholestane-triol) testing is a validated biomarker for enrollment and monitoring

Miglustat (Zavesca) is approved in Europe — trials may study arimoclomol, cyclodextrin, or combination approaches; prior miglustat use must be documented

Neurological severity scale (NPC-CSS or 5-domain scale) score is a key eligibility and efficacy endpoint

NPC1 versus NPC2 genotype and specific variant class may affect trial eligibility for gene therapy trials

Patient Resources

Patient Organization

National Niemann-Pick Disease Foundation

Visit website ↗

Natural History Registry

NPC Registry

Join registry ↗

Orphanet

European reference resource for rare diseases (ORPHA:646)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

Search NORD ↗

Find recruiting Niemann-Pick Disease Type C trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Niemann-Pick Disease Type C. Updated daily.

Related Rare Diseases