Following people with Baker Gordon Syndrome over time to learn how it progresses
Tracks children and adults with a rare genetic brain disorder to measure how it changes.
Plain-language title generated from the registry record
Registry title: Baker Gordon Syndrome Natural History Study
Key facts
- Where
- Columbia, United StatesSee the site
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 0 and 99 years old?
Source: NCT06399952, who can take part
Where in United States
- University of Missouri - ColumbiaColumbia, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Missouri-Columbia
- Trial code
- NCT06399952
- Record updated
- 3 June 2026
- Original description
The goal of this study is to conduct a prospective, longitudinal assessment of the natural clinical progression of children and adults with Synaptotagmin1-Associated Neurodevelopmental Disorder also known as Baker Gordon Syndrome (BAGOS). This will be performed by acquiring baseline measurements and developing effective outcome measures and diagnostic tools for the disorder, to prepare the healthcare system for future clinical trials.Read full original descriptionShow less
A Prospective, Longitudinal and Observational Natural History Study for Children and Adults With Baker Gordon Syndrome - Genetic Autism Alliance
The goal of this study is to conduct a prospective, longitudinal assessment of the natural clinical progression of children and adults with Synaptotagmin1-Associated Neurodevelopmental Disorder also known as Baker Gordon Syndrome (BAGOS). This will be performed by acquiring baseline measurements and developing effective outcome measures and diagnostic tools for the disorder, to prepare the healthcare system for future clinical trials.
Inclusion: Genetically confirmed diagnosis of Baker Gordon syndrome; 0-99 years; Ability to send medical records and diagnostic test results; Ability to complete tests and questionnaires.
Exclusion: The presence of another condition or co-morbidity unrelated to Baker Gordon syndrome, that affects neurodevelopment; In this study, the primary caregivers/LAR for each participant diagnosed Baker Gordon Syndrome will be also considered participants; Caregivers/LAR will have to meet the following inclusion criteria:; Legal caregiver of the patient diagnosed with a Baker Gordon Syndrome; >18 years; Less than 18 years old; Willingness to follow study procedures, as assessed by the research team; Willingness to sign the consent form; Ability to understand all the information regarding the study, as assessed by the research team; Caregivers/LAR Exclusion Criteria:.