GSD VI and GSD IX Natural History

Part of paid clinical trials in Durham, North Carolina.

Sponsor
Duke University
Study ID
NCT04454216
Status
Recruiting
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Conditions

  • GLYCOGEN STORAGE DISEASE IXa1
  • GLYCOGEN STORAGE DISEASE IXa2
  • GSD 6
  • GSD 9 (All Subtypes)
  • Glycogen Storage Disease IXB
  • Glycogen Storage Disease IXC
  • Glycogen Storage Disease VI

Eligibility Criteria

Sex
ALL
Age
0 Years - 90 Years
Healthy Volunteers
Not accepted

Interventions

  • No intervention — OTHER
    This is an observational study that consists of data abstraction from patient medical records.

Study Details

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.

Key Dates

Start date
Sep 18, 2020
Status verified
May 2026
Primary completion
Jan 1, 2030
Completion
Jan 1, 2030

Study Design

Enrollment
400 participants (estimated)

Primary Outcome Measure

Progression of disease confirmed by medical record review [ Time Frame: through study completion, an average of 10 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Duke UniversityDurhamNorth Carolina27710
Rebecca L Koch, PhD, RDN
[email protected]
919-681-8823
Nisha Dalal, M.S. CCC-SLP
[email protected]
919-668-3107

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