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NCT04828863 · ClinicalTrials.gov registry record

Neurocognitive Outcomes and Quality of Life in Adults With Maple Syrup Urine Disease (MSUD)

A clinical trial, sponsored by Children's Hospital of Philadelphia.

Completed
Registry status
44
Enrollment target

NCT04828863 is a clinical trial that has completed, run by Children's Hospital of Philadelphia. The registered enrollment target is 44 participants.

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The verdict

NCT04828863 has completed, sponsored by Children's Hospital of Philadelphia.

COMPLETED
Registry status
44 participants
Enrollment target

Study Summary

Maple Syrup Urine Disease (MSUD) is a disorder of protein metabolism that leads to neurological differences. It is an exciting time where people diagnosed with MSUD are living longer. The investigators want to learn about how adults with MSUD think, feel, and live. The purpose of this research study is to 1) look at thinking skills, behavior skills, life skills, and quality of life in adults with MSUD and 2) measure how medical and personal factors impact these areas. The results of the study will be used to learn how to best help adults with MSUD and how to prepare for their success. In this study, the participants will answer questions on thinking, life skills, behavior skills, and quality of life. These questions will be completed on the internet. The participants will have a formal testing of their thinking and behavior completed virtually. The participants may also have a 1-2-hour telephone conversation about their life. All tests will occur virtually at home. The investigators will send the participants a letter with the results of thinking and behavior tests.

Interventions

  • BEHAVIORAL Neurocognitive testing

Trial Details

FieldValue
Enrollment Target 44 participants
Start Date 2021-06-12
Est. Completion 2023-11-30

Sponsor

Children's Hospital of Philadelphia

431 total trials

What the Registry Record Tells You About NCT04828863

The ClinicalTrials.gov registry entry for NCT04828863 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 44 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Children's Hospital of Philadelphia, which has 431 total studies on file at ClinicalTrials.gov.

The record links to 0 conditions, and to 1 intervention - of which Neurocognitive testing is the first listed.

NCT04828863 reports 0 study locations.

Frequently Asked Questions

What is clinical trial NCT04828863 about?

NCT04828863 is a clinical study titled "Neurocognitive Outcomes and Quality of Life in Adults With Maple Syrup Urine Disease (MSUD)". Maple Syrup Urine Disease (MSUD) is a disorder of protein metabolism that leads to neurological differences. It is an exciting time where people diagnosed with MSUD are living longer. The investigators want to learn about how adults with MSUD think, feel, and live. The purpose of this research study...

What is the current status of trial NCT04828863?

This trial is currently completed. The enrollment target is 44 participants. The study started on 2021-06-12. Estimated completion is 2023-11-30.

What interventions are being tested in trial NCT04828863?

The interventions under investigation include: Neurocognitive testing (BEHAVIORAL).

Who is sponsoring clinical trial NCT04828863?

This trial is sponsored by Children's Hospital of Philadelphia, which has 431 total clinical trials registered on ClinicalTrials.gov.

Data sourced from official public datasets. See our methodology for details. Retrieved and formatted by PlainTrial

Every figure on PlainTrial is rendered directly from the ClinicalTrials.gov registry, no number is typed in by an editor. This page mirrors this trial's own ClinicalTrials.gov registry record, live from the dataset. See our editorial standards & corrections policy, the methodology behind these numbers, or report a data error.