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Posted Oct 25, 2021

Research Project: Social Experiences in CHARGE Syndrome

The announcement below is posted on behalf of Sarah Sykes, M.A. (Doctoral Student at Central Michigan University) and Timothy Hartshorne, Ph.D. (Central Michigan University).
We are investigating the social experiences that individuals with CHARGE syndrome have in school, work, and online. If you are an adult with CHARGE syndrome who is fluent in English, you may be eligible to take our online survey. 

What is this for? The purpose of this project is to better understand the social experiences of adults with CHARGE syndrome, including those which may have been particularly negative. This study will also assess the ways in which adults cope with negative social experiences. 

Who can participate? 

  • Participants must be:
  • An adult with CHARGE syndrome who is 18-years-old or older
  • Fluent in English
  • Able to read and write in English
  • An individual who does not have a Legally Authorized Representative or Appointed Guardian

What would participants need to do? Complete the online survey found in the link below. The online survey involves answering questions about your demographics, as well as your social experiences in school, work, and online. The online survey should take approximately 25-35 minutes to complete. 

Link to online survey

If you want more information: If you have questions, you can contact Sarah Sykes at or Dr. Timothy Hartshorne at  Thank you for your interest in this study!