GBE Deficiency (GSD IV and APBD) Natural History Study

Recruiting Observational Study
Glycogen Storage Disease Type IV Adult Polyglucosan Body Disease GSD4 GSD IV APBD
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Age
0 – 90
Sex
Any
Study type
Observational
Participants needed
200 (estimated)
Sponsor
Duke University · Other
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About This Trial

Collection and review of clinical information related to glycogen branching enzyme (GBE) deficiency, diagnosed as Glycogen Storage Disease Type IV (GSD IV) or Adult Polyglucosan Body Disease (APBD generated during clinic visits.

Trial Locations
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Eligibility Criteria
* Diagnosis of GSD IV or APBD via: * Two variants in the GBE1 gene * Deficient GBE activity in liver, muscle, skin fibroblast or other tissue * One variant in GBE1 gene with evidence of disease that is pathogenic, per the clinician * Able to provide informed consent for self (adults) or affec…
Contacts

Rebecca L Koch, PhD, RDN

919-681-8823

rebecca.koch@duke.edu

CONTACT

Nisha Dalal, M.S. CCC-SLP

919-668-3107

nisha.dalal@duke.edu

CONTACT