22q11 study

22q11 Deletion Syndrome Study

Reducing the risk for and impact of mental health problems amongst children/youth with 22q11 Deletion Syndrome (22q11DS): can genetic counselling for parents help?

Who is conducting the study?

Co-Principal Investigators:         
Jehannine C. Austin, PhD, Associate Professor, Department of Psychiatry, UBC, 604-875-2000 ext. 5943
Prescilla Carrion, M.Sc., Genetic Counsellor, Clinical Assistant Professor, Department of Psychiatry, UBC, 604-822-3617
This study has been approved by the Children’s and Women’s Research Ethics Board.

Background: Individuals with this 22q11 Deletion syndrome are at increased risk to develop a psychiatric disorder. Psychiatric genetic counselling (PGC) is a specialist health discipline that provides people with individualized information and support related to causes of psychiatric disorders, the chances for children to develop these conditions, and about strategies that people can use to promote mental health.

What is the purpose of the study? In this study, we will explore how genetic counselling may impact how parents of individuals with 22q11 Deletion syndrome perceive their child’s chance to develop mental illness, what strategies they use to reduce risk for mental illness, and how they recognize and manage emerging symptoms of mental illness in their children.

Who can participate in the study? Parents of children/youth who are 6-18 years old and who have a diagnosis of 22q11 Deletion Syndrome can participate, as long as they are fluent in English.

Who should not participate in the study? Individuals who have previously undergone psychiatric genetic counselling related to their child’s diagnosis of 22q11 Deletion Syndrome.

What does the study involve? If you agree to take part in this study, it will involve filling out questionnaires (30 minutes prior to the genetic counselling appointment), one in person genetic counselling appointment (1 to 2 hours), and a telephone interview (1 hour).

Confidentiality: Your confidentiality will be respected. Any information regarding your participation in this research study will not be disclosed to anyone outside the stated research team.

Remuneration/Compensation: You will receive $10 in return for the completion of questionnaires and genetic counselling during the one in-person visit and $10 by mail after you have completed the telephone interview. In total, you will receive $20 for participating in this study.

Interested?

If you want to know more about the study, please email the study coordinator, Rolan Batallones at rolanb@mail.ubc.ca 


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