School-Age and Post-Secondary

Service Provision for Children Affected by Cornelia de Lange Syndrome - Study 2


This study was a follow-up to a similar study conducted in 2008. The purpose of this study was to continue to increase our knowledge about children affected by Cornelia de Lange Syndrome (CdLS) and their families by gathering information on the educational and therapeutic experiences of children and their families.


  • Researchers collaborated with the CdLS-USA Foundation to develop a survey that would provide information on parents' experiences with the education system, service and therapy provision, and coordination with the medical system.
  • Over 100 parents of a child with CdLS completed the online survey.
  • A data report and PowerPoint presentation are in preparation and will be posted when available.