See below for ongoing study.
Checklist for Adults with TSC (CHAT-TSC)
Agnies van Eeghen, MD, PhD at Erasmus Medical Centre in Rotterdam, the Netherlands is recruiting volunteers in the U.S. to provide feedback on a questionnaire she and her research team have developed for adults with TSC. If you are an adult with TSC or a parent or caregiver of a dependent adult with TSC and interested in providing feedback about her questionnaire, Checklist for Adults with TSC (CHAT-TSC), please read below.
Dr. Eeghen and her research team developed the CHAT-TSC questionnaire for adults with TSC or caregivers to 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 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 contact Jo Anne Nakagawa at jnakagawa@tscalliance.org or 240-638-4654 or the Erasmus Study Team at Chat.tsc@erasmusmc.nl