Are you an adult with TSC or a parent/caregiver of a dependent adult with TSC?
Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands and her research team have developed a questionnaire for adults with TSC, called the Checklist for Adults with TSC or CHAT-TSC. In this questionnaire, adults with TSC or caregivers can indicate all of the problems experienced living with TSC. In the future, they hope this can be used by patients and health care providers, to discuss all of the problems caused by TSC, and to arrange proper care. Also, it could be used to measure quality of life. The questionnaire will be completed by the person affected by TSC or by a parent or other person who knows him or her very well.
Dr. Eeghen and her team are seeking volunteers to help test this questionnaire. If you want to participate in this, a researcher will contact you by e-mail. The questionnaire will be sent to you together with an evaluation form. On the evaluation form you can indicate what was not clear in the questionnaire. You will be asked to return only the evaluation form, because in this phase they are focusing on your feedback, not on the answers.
If you want to participate in this research project please click on this link http://www.123formbuilder.com/form-4405144/contactformulier (the link can also be copied in your web browser) to enter your name and email address, then click the button “stuur het bericht” (Send the Message).
For more information or questions about the research you can contact the Erasmus Study Team at Chat.tsc@erasmusmc.nl