NCT06399952 Baker Gordon Syndrome Natural History Study
| NCT ID | NCT06399952 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University of Missouri-Columbia |
| Condition | Rare Diseases |
| Study Type | OBSERVATIONAL |
| Enrollment | 50 participants |
| Start Date | 2024-04-30 |
| Primary Completion | 2027-05-05 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 50 participants in total. It began in 2024-04-30 with a primary completion date of 2027-05-05.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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.
Eligibility Criteria
Inclusion Criteria: * 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 Criteria: • 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: * \>18 years. * Legal caregiver of the patient diagnosed with a Baker Gordon Syndrome. * 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: • Less than 18 years old.
Contact & Investigator
W. David Arnold, MD
PRINCIPAL INVESTIGATOR
University of Missouri-Columbia
Frequently Asked Questions
Who can join the NCT06399952 clinical trial?
This trial is open to participants of all sexes, aged 0 Years or older, up to 99 Years, studying Rare Diseases. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06399952 currently recruiting?
Yes, NCT06399952 is actively recruiting participants. Contact the research team at wdavidarnold@health.missouri.edu for enrollment information.
Where is the NCT06399952 trial being conducted?
This trial is being conducted at Columbia, United States.
Who is sponsoring the NCT06399952 clinical trial?
NCT06399952 is sponsored by University of Missouri-Columbia. The principal investigator is W. David Arnold, MD at University of Missouri-Columbia. The trial plans to enroll 50 participants.
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