RECRUITING

Baker Gordon Syndrome Natural History Study

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

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

Quick Facts

Study Start:2024-04-30
Study Completion:2026-05-05
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06399952

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.

Ages Eligible for Study:0 Years to 99 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Not specified
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Genetically confirmed diagnosis of Baker Gordon syndrome.
  2. * 0-99 years
  3. * Ability to send medical records and diagnostic test results.
  4. * Ability to complete tests and questionnaires.
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Paul R Carney, MD
CONTACT
573-882-5779
prcarney@health.missouri.edu

Principal Investigator

Paul R Carney, MD
PRINCIPAL_INVESTIGATOR
University of Missouri-Columbia

Study Locations (Sites)

University of Missouri Columbia
Columbia, Missouri, 65201
United States

Collaborators and Investigators

Sponsor: University of Missouri-Columbia

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

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-04-30
Study Completion Date2026-05-05

Study Record Updates

Study Start Date2024-04-30
Study Completion Date2026-05-05

Terms related to this study

Keywords Provided by Researchers

  • Baker Gordon Syndrome
  • BAGOS
  • Synaptotagmin 1-Associated Neurodevelopmental Disorder

Additional Relevant MeSH Terms

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