Clinical Trials Directory

Trials / Completed

CompletedNCT02013583

The Glucose Transporter Type I Deficiency (G1D) Registry

Status
Completed
Phase
Study type
Observational
Enrollment
471 (actual)
Sponsor
University of Texas Southwestern Medical Center · Academic / Other
Sex
All
Age
Healthy volunteers
Not accepted

Summary

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.

Detailed 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.

Conditions

Interventions

TypeNameDescription
OTHERNo interventionThis is an observational registry. No interventions are required or provided.

Timeline

Start date
2013-12-01
Primary completion
2024-08-01
Completion
2024-08-01
First posted
2013-12-17
Last updated
2025-03-07

Locations

1 site across 1 country: United States

Source: ClinicalTrials.gov record NCT02013583. Inclusion in this directory is not an endorsement.