TSC Alert

Contribute to a Study About Standard Neurological Care in TSC Children

Information about the Warsaw Medical University study:

Tuberous sclerosis complex (TSC) is a disease with a very high risk of epilepsy and its comorbidities, such as intellectual disability and autistic behavior with significant impact on the daily life of families with this condition.

We are currently conducting an inquiry study about a worldwide standard practice of neurological care of children with TSC and we would like to invite you to take part in this study. Your name/site has been selected for this survey due to your presence at the TSC conferences in the last 3 years or was indicated by the Tuberous Sclerosis Association as a clinic taking care of TSC patients.

The aim of this project is to explore current standards of neurological care for children with TSC considering epilepsy diagnosis and management in the leading TSC centers in the world.

Our second aim is also to provide a list with contact details to the centers/hospitals taking care of TSC patients to facilitate patients, families, and physicians the obtaining further information, referring patients, and collaborate in research. We would like also to examine worldwide issues and challenges of epilepsy management in TSC children.

We would be truly grateful for your help and contribution to this project and the TSC community. If you are interested in taking part in this study, please fulfill the attached questionnaire (link below). Your personal data (e.g. private e-mail address or phone number) will not be shared or published.

If you do not take care of children with TSC, we would be grateful if you could provide us with a contact detail (e-mail address) to your colleague who takes care of patients with TSC.

You may find the questionnaire here.

If you have any questions, do not hesitate to ask. Contact e-mail address: tscneurology@gmail.com

Kind regards,

Monika Słowińska
Sergiusz Jóźwiak
Warsaw Medical University