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The 22q11.2 deletion syndrome (22q11DS) is thought to be the most common microdeletion syndrome. The health problems associated with the 22q11DS can strongly impact the quality of life of patients and their families. We aim to explore the impact 22q11DS have on the well-being of patients and their families and what costs they experience. In addition, we hope to test an online coaching intervention designed to help reduce this impact on families.
The study has three parts and the families can choose to take part in different parts. First, we will conduct an online survey with 500 parents of children with 22q11DS aged 3-15 years. In the survey, parents will be asked to provide information about their own and their children’s well-being, the barriers to care they experience, and 22q11DS-related costs (for example for medication, transportation, and so on). We will also directly interview some parents about their experiences and opinions. We would love to invite families experiencing a lot of problems or just a few problems as well as families who experience no problems at all. We want to hear and learn from everyone. The families who experience problems will be invited to take part in a clinical trial, in which some of the families will receive an online intervention designed to help improve their well-being.
Through the study, we hope to better understand the needs and wishes of families. We also hope that the online intervention can successfully help families so that the intervention can be offered to many more families in the future. You can find more information about the project and a survey link here: 22q11
Dr. Sandra Meier
IWK Health Centre, Halifax, NS.