Research Survey Opportunity

The measurement of quality of life is essential for health care decision making. It is unknown whether currently available quality of life measures accurately capture the lived experience of people with rare genetic conditions. This may mean that people with rare genetic conditions are not able to access health care for which they should be eligible. This survey from the University of Melbourne is designed to assess whether currently available questionnaires are able to distinguish differences in quality of life. If you have TSC, or you are the parent/carer of a child or adult with TSC, you are invited to participate in this survey. The survey should take between 30 and 45 minutes to complete.

Link to survey: Quality of life survey