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DriveUCD: How Urea Cycle Disorders Affect Driving

About this study

People with urea cycle disorders (UCDs) can have trouble with thinking skills that are important for safe driving. These skills include paying attention, remembering information, making plans, and solving problems.

Researchers want to learn how UCDs affect brain activity during driving. They will compare people with UCDs to healthy volunteers of the same age and sex. Participants will answer questions about their health, diet, driving habits, and thinking skills.

The study takes place during 1 visit. Participants will complete tests that measure memory, attention, planning, problem-solving, and hand movements. They will also answer questions about their driving experiences.

Participants will wear a soft cap with small sensors that measure changes in blood oxygen levels in the brain. The cap is worn over the head like a helmet. It does not use needles or surgery and will not be painful. While wearing the cap, participants will use a driving simulator with a steering wheel, pedals, and screens.

The driving tasks will get harder as the study continues. This will help researchers learn how the brain responds in different driving situations. The study does not include any medicines or treatment.

Researchers want to learn how UCD affects a person’s brain activity while driving. What we learn from this study may help improve the safety, independence, and quality of life for people with UCDs.

Eligibility overview

  • 16–40 years old
  • Has a urea cycle disorder (UCD) confirmed by genetic or biochemical testing, or healthy volunteer control
  • Has had active driver's license for at least 6 months
  • Able to read and understand English 

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.

Overview

Full title:

DriveUCD: Cognitive and Motor Function Examination in Patients with Urea Cycle Disorders (UCDs) During a Driving Task Using Functional Near Infrared Spectroscopy (fNIRS)

Study goal:

To study brain activity during simulated driving in people with urea cycle disorders and healthy volunteers

Diagnosis:

Urea cycle disorder

Age:

16–40 years

Clinical trial categories:

Urea Cycle Disorders

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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