An observational study in Glycogen Storage Disease Type I, Glycogen Storage Disease Type IB and Glycogen Storage Disease Type IA, sponsored by Şükrü Arman AKSOY. Not yet recruiting at 1 site in Turkey (Türkiye). Open to participants aged 2 Years to 18 Years. Per ClinicalTrials.gov, last updated 2026-10-15.
Sponsored by Şükrü Arman AKSOY · Observational
The goal of the study is to investigate the effects of carbohydrate counting training-administered to pediatric patients diagnosed with GSD 1a and 1b-on blood glucose regulation, quality of life, urinary glucotetrasaccharide (Glc4) levels, and various biomarkers. The main questions it aims to answer are:
Children aged 2-18 years diagnosed with GSD1 will be monitored for a period of 3 months; during this time, food consumption records and anthropometric measurements will be collected, retrospective analysis of continuous glucose monitoring sensor(CGMS) data will be conducted, and various questionnaires and rating scales will be completed both online and in person.
36 studies on the registry are indexed under Glycogen Storage Disease; 13 are open to participants now.
This study's planned enrollment of 8 is below the median of 85 across 16 observational studies indexed under Glycogen Storage Disease.
Browse Glycogen Storage Disease studies →This is the only study on the registry with Şükrü Arman AKSOY as lead sponsor.
Counted across the registry records on this site, refreshed daily.
Pediatric patients diagnosed with GSD1 followed at the Pediatric Metabolism Clinic of Ankara Etlik City Hospital
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Voluntarily participating in the study, Being between the ages of 2 and 18, Having a diagnosis of Glycogen Storage Disease Type 1a or Type 1b, Using uncooked cornstarch
Exclusion Criteria:
Having previously received carbohydrate counting training, Having a diagnosis of one or more of the following conditions: diabetes (Type 1 or Type 2), chronic renal failure, or liver diseases not associated with metabolic etiology, Having undergone a liver transplant, Having cardiac, muscular, or skeletal system abnormalities, Illiteracy of the participant or the parent/caregiver, Having a health condition that prevents answering research questions, Continuing to be fed with breast milk, Using slow-absorption modified starch (e.g., Glycosade), Patients receiving nutrition via routes other than the oral route (e.g., PEG, NG)
Changes in blood glucose regulation among individuals who have received carbohydrate counting training, compared to baseline values.
Time frame: 3 months
Changes in urinary Glc4 levels in individuals who received carbohydrate counting training compared to baseline values.
Time frame: 3 months
Change in quality of life scale scores of individuals who received carbohydrate counting training, relative to baseline values.
Without any specific cut-off value, scores are assigned as follows: "if it is never a problem" 0 "if it is rarely a problem" 1 "if it is sometimes a problem" 2 "if it is frequently a problem" 3 "if it is almost always a problem" 4 points are awarded.
Time frame: 3 months
Change in HbA1c (%) value compared to baseline
Time frame: 3 months
Change in the frequency of infections compared to baseline
Time frame: 3 months
Change in the frequency of hypoglycemia compared to baseline
Time frame: 3 months
PDFs hosted by the registry, ClinicalTrials.gov.
Plan to share: Yes — There is a plan to make IPD and related data dictionaries available.
Start is estimated for Oct 2026; primary completion for Jan 2027, 3 months later.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is not yet recruiting, as verified in Oct 2026. You cannot join it, but the record below documents what was studied.
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