Baker Gordon Syndrome Natural History Study

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.

Conditions

Rare Diseases, Autism or Autistic Traits, Development Delay, SYT-SSX Fusion Protein Expression, Sleep Disorder, Epilepsy, Generalized, Motor Delay

Study Overview

Study Details

Study overview

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.

A Prospective, Longitudinal and Observational Natural History Study for Children and Adults With Baker Gordon Syndrome - Genetic Autism Alliance

Baker Gordon Syndrome Natural History Study

Condition
Rare Diseases
Intervention / Treatment

-

Contacts and Locations

Columbia

University of Missouri Columbia, Columbia, Missouri, United States, 65201

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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.

Ages Eligible for Study

0 Years to 99 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Missouri-Columbia,

Paul R Carney, MD, PRINCIPAL_INVESTIGATOR, University of Missouri-Columbia

Study Record Dates

2026-05-05