GSD VI and GSD IX Natural History

Recruiting Observational Study
Glycogen Storage Disease VI GLYCOGEN STORAGE DISEASE IXa1 GLYCOGEN STORAGE DISEASE IXa2 Glycogen Storage Disease IXB Glycogen Storage Disease IXC GSD 9 (All Subtypes) GSD 6
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
400 (estimated)
Sponsor
Duke University · Other
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About This Trial

Collection and review of clinical information related to Glycogen Storage Disease Type VI (GSD VI) OR Glycogen Storage Disease Type IX (GSD IX) generated during clinic visits.

Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Diagnosis of GSD VI or GSD IX via: * Two variants in the PYGL, PHKA1, PHKA2, PHKG1, PHKG2, or PHKB gene (or one variant with evidence of disease). Note: for males, one variant in the PHKA1 or PHKA2 gene is sufficient for inclusion. * Deficient GP activity or PhK activity …
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