The Glucose Transporter Type I Deficiency (G1D) Registry
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Details and patient eligibility
About
The purpose of this protocol is to create a registry for patients diagnosed with Glucose Transporter Type 1 Deficiency (G1D), or patients experiencing symptoms consistent with G1D but not yet diagnosed, to enter medical information for physicians and other health researchers to analyze to increase the understanding of G1D and any sub-diagnoses.
Full description
This is a registry for patients diagnosed with G1D, or experiencing symptoms G1D but not yet diagnosed. The registry will be available online for patients to provide consent, register, enter data, and modify data as necessary. The registry will be programmed by programmers at UT Southwestern Medical Center. The registry will provide the opportunity for patients to enter a comprehensive medical history, from symptoms to lab results to medications and other treatment regimens.
This registry is entirely patient-driven; no medical records will be requested by the investigator, nor are visits with the investigator or any other research personnel required.
The registry database will be periodically "cleaned"; that is, records will be reviewed for duplication of entries and consistency of data. Many data validation checks are incorporated into the registry. Additional data clarification may be requested from users if users have chosen to provide an email address for contact.
Enrollment
Sex
Volunteers
Inclusion criteria
- Males and females
- G1D diagnosis
- Patients experiencing symptoms of G1D but who have not yet received a diagnosis
Exclusion criteria
- Patients who are not experiencing any symptoms of G1D
Trial design
750 participants in 1 patient group
Trial contacts and locations
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Central trial contact
Adrian Avila, BS
Data sourced from clinicaltrials.gov
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