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NCT05600946

Characterization of Dysmorphology in Subjects With Creatine Transporter Deficiency

Recruiting now Last updated 16 September 2025
What this trial tests

trial in Cognitive Disorder in 19 participants. Currently enrolling.

Timeline
24 October 2022
Primary endpoint
1 September 2026
1 September 2026

Quick facts

Lead sponsorEunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
StatusRecruiting now
Study typeOBSERVATIONAL
Enrollment19
Start date24 October 2022
Primary completion1 September 2026
Estimated completion1 September 2026
Sites1 location across United States

Conditions studied

Sponsor

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Who can join

Adults 2 to 40, male only, with Cognitive Disorder or Metabolic Disease. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

Background: Creatine transporter deficiency (CTD) is a genetic disorder that mainly affects the brain in males. CTD causes intellectual disability that can be mild to severe. People with CTD may have seizures and behavioral issues. They may have slow growth and tire easily. CTD may sometimes be confused with autism or other disorders. Better diagnostics are needed. The study team in an NIH study noted that the faces of children with CTD can look similar. For this natural history study, an expert will examine photos of children with CTD. Any shared traits found might help to diagnose CTD. Objective: To look for shared facial features of children with CTD. Eligibility: Males aged 2 to 40 years old with CTD who were in study 17-CH-0020. Design: Some participants in study 17-CH-0020 had pictures taken of their faces. The NIH study team wants to share these photos with a colleague in Canada. This person is an expert at evaluating how genetic disorders affect people s bodies. Participant data collected during the study may also be sent to this expert. This data may include diagnostic images and results from lab tests. Some children did not have their pictures taken during study 17-CH-0020. Parents are asked to take pictures of these children and send them to the study team. These photos can be sent to a secure portal. The photos can also be taken in-person during a clinic visit. The photos may be printed in clinical study journals. But this is not required. Parents will be asked to sign a separate consent before the photos are published....

Publications & conference data

1 peer-reviewed publication reference this trial (live from Europe PMC):

  1. Delineation of Facial Dysmorphology in Males With Creatine Transporter Defect.
    Perreault J, Porter FD, Nowaczyk MJM. · · 2026 · PMID 41735203 · DOI 10.1002/ajmg.a.70093

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Other recruiting trials for Cognitive Disorder

Currently open trials in the same condition.

Other Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) trials

Trials by the same sponsor.

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Data sources for this page

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