School-Age and Post-Secondary

Service Provision for Children Affected by Cornelia de Lange Syndrome - Study 1


The purpose of this study was to increase our knowledge about children affected by Cornelia de Lange Syndrome (CdLS) and their families. The goal of the project was to gather information on children and families' experiences with the educational and medical systems in order to develop guidelines for educators and families.


  • Researchers collaborated with the CdLS-USA Foundation to develop a survey that would provide information on parents' experiences with the education system and coordination with the medical system.
  • Over 200 parents of a child with CdLS completed the online survey.
  • A data report and PowerPoint presentation were completed.
  • Information collected from this survey prompted the development of a follow-up survey to continue to gather information on this population.