Dr. Agnies Van Eeghen and her research team at Erasmus Medical Centre in The Netherlands are conducting a research study to develop a questionnaire to investigate the burden and restrictions experienced by adults with TSC.

The questionnaire addresses medical conditions and the impact of TSC on quality of life. In this way, they will know more about issues that are important for adults with TSC and which issues require more attention and/or treatments. The questionnaire has to completed by the adult with TSC or a parent or other representative. It will take about 40 minutes in total and it consists of 3 (digital) questionnaires that can be filled out from any computer at your convenience. In other words, you can stop and return to it later to finish answering the questions.

If you decide to participate in this study after reading the letter of information you can sign up here.

If you have any other questions, please contact Dr. Van Eeghen’s research team by sending an email to chat.tsc@erasmusmc.nl.