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TSC Alert

Archive for July, 2020

2020 International TSC Conference Update

The International Tuberous Sclerosis Complex Research Conference 2020 has been postponed and will now take place June 17-19, 2021 at the Royal College of Physicians in London. A virtual event will also take place on Friday, November 13, 2020 focused on emerging research around TSC and COVID-19, and networking for early career researchers. LEARN MORE

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 is not listed in the online tool? Contact Zoë Fuchs, TS Alliance Science Project Coordinator, at zfuchs@tsalliance.org.

TS Alliance Partners with NeurologyLive™

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The Tuberous Sclerosis Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. You can view our partner page here. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe

TSC Biosamples Available at No Cost to Researchers

Although COVID-19 is delaying many aspects of academic research, the TS Alliance can help you prepare to launch your research forward as soon as this public health crisis has passed. We can review and approve your applications for biosample use in advance so samples may be shipped as soon as is permissible by your institution. 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…

Update on TSC Biosample Repository Project

The TS Alliance has resumed biosample collection and is able to consent patients for the project via a 20-minute phone call. In coordination with a national mobile phlebotomy service the TS Alliance can collect blood samples from anyone in the United States with TSC. If you see patients who may be interested in participating in this project please download and share our study flyer. Learn More

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…

COVID-19 Considerations for TSC Medical Professionals

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Because current data do not provide clear answers for many TSC patients’ questions, drawing on opinions from key leaders in TSC clinical care, the TS Alliance’s Science and Medical Committee, drawing on opinions from key leaders in TSC clinical care, offers some general considerations for how to answer questions from TSC patients about COVID-19 and how to provide individualized care for TSC patients during the COVID-19 pandemic based on the information available to date in the publication listed below. Download Physician Recommendations The TS Alliance also developed a letter template physicians can use for their patients who are having trouble…