The Glucose Transporter Type I Deficiency (G1D) Registry
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT02013583|
Recruitment Status : Recruiting
First Posted : December 17, 2013
Last Update Posted : January 18, 2020
|Condition or disease||Intervention/treatment|
|GLUT1 Deficiency Syndrome Glucose Transporter Type 1 Deficiency Syndrome Glucose Transporter type1 (GLUT-1) Deficiency GLUT-1 Deficiency Syndrome||Other: No intervention|
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.
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||750 participants|
|Target Follow-Up Duration:||5 Years|
|Official Title:||The Glucose Transporter Type I Deficiency (G1D) Registry|
|Study Start Date :||December 2013|
|Estimated Primary Completion Date :||December 2022|
|Estimated Study Completion Date :||December 2022|
Glucose Transporter Type I Deficiency
Other: No intervention
This is an observational registry. No interventions are required or provided.
- Symptom Severity [ Time Frame: 5 years ]It is hypothesized that symptom severity will correspond to the degree of biochemical dysfunction or mutation type (when available). A broad range of symptoms and severity ratings are collected both retrospectively and prospectively.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02013583
|Contact: Adrian Avila, BSfirstname.lastname@example.org|
|United States, Texas|
|UT Southwestern Medical Center||Recruiting|
|Dallas, Texas, United States, 75390|
|Principal Investigator:||Juan M. Pascual, MD, PhD||UT Southwestern Medical Center|