Grant: Project Grant

Cerebral palsy (CP) is the most common cause of physical handicap in children. CP describes a group of diseases that affect the brain in early life. We are now starting to understand that our genetic code plays an important role in causing CP. Genetic testing is not done routinely for all children with CP. To change practice, we need more proof that genetic testing brings important information to a lot of families with CP, and how this information affects families. We will invite 200 children and their parents participating in the Canadian CP Registry (CCPR), living in the Greater Montreal and Toronto areas, Calgary and Edmonton, to give a blood sample. From their blood, we will read all of their genetic information, using a method that has been used in many other genetic disorders but has never been used before in CP research. We will look for genetic mutations that are present in the child but not seen in their parents. We will also ask families to complete two questionnaires to see how they feel about this testing, and if it makes a difference to their lives. We will see if the effect of genetic testing on families is different by type of CP and also by parent characteristics. With a more complete understanding of the genetic causes of CP, doctors will be able to identify CP earlier, have better ways of preventing CP, develop new therapies and better understand the causes of CP. Also, with more information on the impact of genetic testing on the family, doctors will be better able to support families after they get their test results, decrease the family's level of stress and have a patient-centered approach to care.