The Glucose Transporter Type I Deficiency (G1D) Registry
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | Any |
| Updated: | 12/7/2018 |
| Start Date: | December 2013 |
| End Date: | December 2022 |
| Contact: | Adrian Avila, BS |
| Email: | rare.diseases@utsouthwestern.edu |
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.
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.
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.
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.
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
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