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TSC Alert

Archive for the ‘Clinical Studies’ Topic

New Clinical Trial Finder Tool

The TS Alliance has partnered with Clinical Trial Connect to develop a user-friendly Clinical Trial Finder Tool to help individuals and families affected by TSC participate in relevant clinical trials. You can find the tool on our website here. Are you conducting a study involving patients with TSC that isn’t listed in the online tool? Contact Zoë Fuchs, TS Alliance Science Project Coordinator, at zfuchs@tsalliance.org.

Research Study on TSC and COVID-19

The TS Alliance is collecting clinical information about individuals with TSC who had COVID-19 infection. Please circulate to your patients: The Tuberous Sclerosis Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who had COVID-19 infection. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and other TSC conditions affect the risk of getting COVID-19 and its severity. If you or your loved one with TSC had COVID-19 confirmed by testing, please consider participating in the TS Alliance TSC Natural History Database. To…

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. 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…

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. 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…

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…

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…

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…

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…