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TSC Alert

Archive for November, 2019

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.

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…

TSC Biosamples Available at No Cost to Researchers

Are you looking for samples from TSC patients to use in your lab? The TSC Biosample Repository has a growing collection of samples tied to phenotypic data. In most cases, we can ship these samples at no charge to the investigator. To date, we have shipped 749 samples for use in diverse projects, ranging from quantification of sphingolipids in plasma to investigating mitochondrial DNA heteroplasmy. As of November 1, 2019, the TSC Biosample Repository has collected: 351 buccal cell samples for DNA isolation 265 blood samples from which plasma and white blood cells have been isolated 10 tissue samples, including…

Come See Us at Upcoming Meetings and Conferences

The Tuberous Sclerosis Alliance (TS Alliance) will be exhibiting at several upcoming meetings this year: American Society of Nephrology Meeting in Washington, DC (Exhibit Dates: November 7-9, Booth Number: 2906) American Epilepsy Society Annual Meeting in Baltimore, MD (Exhibit Dates: December 7-9, Booth Number: 949) If you’re attending either of these meeting be sure to stop by our booths and say hello!