Survey about life with TSC and partial refractory seizures


Do you have TSC with partial refractory seizures or live and care for someone who does? Then Adlephi Values want to hear about your experiences through this online survey.


This research study aims to better understand what it is like to live with TSC and partial refractory seizures, from the experience of patients and their caregivers. Caregivers are defined as a family member who is a primary caregiver for the person with TSC and lives with them. The online survey shouldn’t take longer than 15 minutes to complete, and asks for information about the health of the TSC patient and the seizures they experience (if any), and how having TSC and partial refractory seizures impacts on their life. 


The survey is only available online and is conducted by Adelphi Values, a research company, on behalf of a pharmaceutical company. The survey can be completed on a mobile device but is easier to complete on a computer if possible. Please note, it is not possible to save the survey once you have started. If you have any questions about this survey or study, please contact Laura Grant laura.grant@adelphivalues.com