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| Name | Class |
|---|---|
| Global Center for Glycogen Storage Disease held at the Jewish Community Foundation | UNKNOWN |
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The goal of this observational study is to determine if home lactate meters (both capillary and serum sample) are accurate, compared to lab serum lactate in a population of patients with glycogen storage disease type 1a and to determine if the Accu Chek Guide glucometer (capillary sample) is accurate, in a population of patients with glycogen storage disease type 1a.
The goal of this observational study is to determine if home lactate meters (both capillary and serum sample) are accurate, within 20% of lab serum lactate reading 95% of the time, in a population of patients with glycogen storage disease type 1a and to determine if the Accu Chek Guide glucometer (capillary sample) is accurate, within 20% of lab serum glucose reading 95% of the time, in a population of patients with glycogen storage disease type 1a.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| blood glucose meter; blood lactate meter | Device | Blood lactate level measured by finger-stick with over the counter meter. Blood glucose level measured by finger-stick. |
| Measure | Description | Time Frame |
|---|---|---|
| Home lactate meter accuracy in GSDIa compared with lab lactate | Lactate level via point of care finger-stick and lab draw | Every 1-3 hours for a maximum 33 hours |
| Measure | Description | Time Frame |
|---|---|---|
| Glucometer accuracy in GSDIa compared with lab lactate | Glucose level via finger-stick and lab draw | Every 1-3 hours for a maximum 33 hours |
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Inclusion Criteria:
Exclusion Criteria:
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Patients of Connecticut Children's birth to age 60 years with diagnosed Glycogen Storage Disease Type Ia, that are seen in clinic between 7/2020 - 7/2024, or that present to emergency room or are admitted to Connecticut Children's for surgery, acute illness or dose titration admission.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Malaya Mount, MS, RD | Contact | 860-837-6700 | mmount@connecticutchildrens.org | |
| Rebecca Riba-Wolman, MD | Contact | 860-837-6700 | rriba@connecticutchildrens.org |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Connecticut Children's Medical Center | Recruiting | Hartford | Connecticut | 06107 | United States |
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| ID | Term |
|---|---|
| C538655 | Hepatorenal form of glycogen storage disease |
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