Below is a list of current research projects that are inviting participation by individuals with Down syndrome and/or their families. All studies listed here have received ethics approval and have been reviewed by our research advisory committee. To submit your study for consideration, please contact us.
B.C. Down Syndrome Survey – for Parents/Caregivers of Children/Youth/Adults with Down Syndrome
There are only two weeks remaining to complete the Down Syndrome Survey – for Parents/Caregivers of Children/Youth/Adults with Down Syndrome, and we have now expanded the survey beyond British Columbia to ask for participation from families and caregivers in Alberta and Ontario.
Together with some dedicated medical professionals, who have donated their time to support this effort, we have developed a survey to assess the current health care needs of people with Down syndrome. We hope to have greater participation; currently there have only been 234 families in British Columbia who have completed the survey, including many who have partially completed the survey.
Many people with Down syndrome are slipping through the cracks due to the lack of a coordinated model of health care. Poor health care and limited access to important health screening means poor developmental outcomes and health across the lifespan. We need to raise the bar for health care practices and our hope is that the Down syndrome community will participate by providing the information needed to support our advocacy efforts. Without an expression of interest by the affected community it will be difficult to demonstrate that improvements are needed.
The survey takes about 30 minutes, and technical assistance is readily available. Please complete this important survey, ask your friends to participate, spread the word and help us build some momentum for change.
The following link will bring you to our survey:
Please try to complete the questionnaire as completely as possible, as the degree of completeness will determine the quality of the information obtained. We also recognize that for some of the questions you just might not have answers, so please fill out the survey to the best of your ability.
We aim to publish the results of this ‘needs assessment survey’ and hope for your participation. Each individual contribution will increase the significance of our findings, adding additional value to our publication; direct quotes from survey responses may also be used in teaching materials for healthcare professionals, to bring awareness to common challenges children, youth, and adults with DS experience.
If you are interested in joining our community and would like to connect with the Down Syndrome Research Foundation (e.g. to join a parent group or seek specific information), please click on the following link to email your contact information: https://www.dsrf.org/contact-us/.
If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598 (email: RSIL@ors.ubc.ca or call toll free 1-877-822-8598). If you have any questions or are looking for resources regarding Down syndrome, please contact:
If you experience any technical difficulties or are unsure about how to answer particular sections of the survey, please contact:
Ms. Nadia Beyzaei
Sleep/Wake-Behaviour Clinic & Research Lab
Sunny Hill Health Centre for Children/ B.C. Children’s Hospital
3644 Slocan Street, Vancouver, BC, V5M 3E8, Canada
Phone: (604) 453-8300 ext. 8408
Ms. Dawn McKenna & Ms. Pat Hanbury
on behalf of the Down Syndrome Research Foundation
Dr. Sylvia Stockler, Department of Paediatrics, B.C. Children’s Hospital, UBC
Dr. Osman Ipsiroglu, Department of Paediatrics, B.C. Children’s Hospital, UBC
Dr. Linlea Armstrong, Department of Medical Genetics, UBC
on behalf of the Medical Research Team
Research Study: Exploring the Lived Experience of Continuing a Pregnancy After a Prenatal Diagnosis of Down Syndrome