Natural History Study

We are excited to invite families affected by Baker Gordon Syndrome to participate in the first-ever Natural History Study for this rare condition. This study, funded by the Genetic Autism Alliance at the University of Missouri, is incredibly important because it will help us better understand how the syndrome progresses over time, providing vital information that could lead to improved treatments and care.

Contribute to Research

By sharing your journey, you’ll be contributing to research that could benefit future generations, offering hope for more effective therapies. Your participation is a powerful step toward making a difference in the lives of everyone affected by Baker Gordon Syndrome. Together, we can build a brighter future.

Submit Interest in Study

Review overview of trial on NIH ClinicalTrials.gov.

Questions about the Natural History Study

  • The study's purpose is to identify demographic, genetic, environmental, treatment/concomitant modalities, biomarkers, and other variables that correlate with the disorder's development and outcomes.

  • Understanding the natural history of BAGOS is crucial for planning potential therapies, drug development, and other treatment options. Additionally, a better understanding and awareness of BAGOS may likely lead to the discovery of this mutation in other individuals with related neurodevelopmental difficulties and phenotypes.

  • Collection of medical records, a recording of gait and the participation in numerous zoom meetings in which the study coordinator will verbally read questionnaires/assessments to the participants. This study also has an optional portion in which the participant with BAGOS can choose to participate in the collection of a one-time blood sampling and/or skin biopsy. Participation in this section of the study is not required to participate in the natural history study, it is just an optional addition.

  • Yes, each record will be assigned a code with all names and identifying information removed to ensure privacy is protected throughout the study. 

  • Study participation will take place over the course of 24 months. The number of visits will vary between 5 to 10 depending on the questionnaire/assessments the participant qualifies for. Each visit will last approximately 1 to 3 hours based on the assessment being performed.

  • No, there will be no costs associated with participation.

  • Yes, you are welcome to withdraw at any time.

  • There will not be immediate feedback or results available. The information collected will serve as a tool to support planning potential therapies, drug development, and other treatment options.

  • srmhvc@umsystem.edu or call at (573) 882-6720

  • This study also has an optional portion in which the participant with BAGOS can choose to participate in the collection of a one-time blood sampling and/or skin biopsy. Participation in this section of the study is not required to participate in the natural history study, it is just an optional addition.

  • Study participation will take place over the course of 24 months.

Submit Interest in Study

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