The data in this analysis came from the development and sleep sections of the Down Syndrome Needs Survey (demographics, diagnoses/medications, development, sleep, feedback). The survey was distributed within British Columbia, Alberta and Ontario (March-April 2015).

The data showed a high prevalence of symptoms of sleep disorders in children with DS and with and without language difficulties; the nature of the study did not allow for causality-related comments. However, the data justify a prospective longitudinal observational study, investigating language development and sleep disturbances on a long-term base utilizing video-recordings. The protocol development endeavour became subject of Melvin Chan’s honours thesis at UBC.

Achievements: The development of a participatory research protocol, which supports natural history studies of individuals with Down syndrome.

Project Lead: Osman Ipsiroglu (BC Children’s Hospital, Vancouver, BC)

Co-Leads: Susan Fawcett (Down Syndrome Research Foundation, Burnaby, BC), Karen Derry (Sunny Hill Health Centre for Children, BCCH)

Research Assistants: Melvin Chan & Nadia Beyzaei (leads), Emmanuel Tse, Arshdeep Marwaha

Publications: Abstract, poster, Melvin Chan’s thesis: http://hdl.handle.net/2429/62698