The CACNA1A Perspectives Project - Understanding the Disease Burden and Treatment Priorities for CACNA1A-related Disorders |
For individuals with CACNA1A-related disorders and their families, improving quality of life is an important factor for family well-being. This survey is our attempt to better understand the family/caregiver/patient perspectives, experiences, needs, and priorities with regard to the health and quality of life of the CACNA1A community. We hope you will use this survey to articulate what’s important to you and your family, as your responses will help us prioritize the Foundation’s research agenda.
We ask that only one survey be completed per individual with a CACNA1A diagnosis.
In order to complete this survey, we ask that you check your genetic test report listing the exact CACNA1A variant and include that information in question #2. This is important so we can understand the disease burden of specific variants.