GSD IX Natural History Study
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- STATUS
- Recruiting
-
- End date
- Apr 5, 2030
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- participants needed
- 50
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- sponsor
- Duke University
Summary
GSD IX patients will be consented to this natural history chart review study. Data will be collected from medical charts including, but not limited to: physical examinations, imaging studies, review of systems, age of diagnosis, quality of life surveys, growth delay assessment, metabolic control, dietary analysis, urine and blood labs, muscle strength, lab test results, biopsy specimens, gene sequencing, oligosaccharide and ketone analysis and biotinidase activity levels. Participant's medical charts will be continually reviewed for the duration of the study. If a liver, muscle or skin biopsy sample has been collected, a piece of the sample may be requested and stored for research purposes.
Details
| Condition | Glycogen Storage Disease |
|---|---|
| Age | 100years or below |
| Clinical Study Identifier | NCT04454216 |
| Sponsor | Duke University |
| Last Modified on | 19 February 2024 |
How to participate?
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.
Learn moreIf you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.
Learn moreComplete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.
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