TSC Alert

Archive for September, 2020

New Clinical Trial Finder Tool

The TSC 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, TSC Alliance Science Project Coordinator, at zfuchs@tscalliance.org.

TSC Alliance Partners with NeurologyLive™

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The TSC 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

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

TSC Biosamples Available at No Cost to Researchers

Although COVID-19 is delaying many aspects of academic research, the TSC Alliance can help you prepare to launch your research forward as soon as this public health crisis passes. 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 shipped…

TSC Alliance Contributes Data to RDCA-DAP

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The TSC Alliance has recently contributed data to The Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP), funded by the U.S. Food and Drug Administration and developed by the Critical Path Institute and the National Organization for Rare Disorders.

Update on TSC Biosample Repository Project

The TSC 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 TSC 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

Join The LAM Foundation for Their Early Stage Investigator Symposia

The LAM Foundation will be hosting their inaugural Early Stage Investigator (ESI) Symposia September 22 and October 8! The purpose of the ESI Symposia is to stimulate scientific exchange, networking, and collaboration among the next generation of LAM scientists. These two meetings will showcase Early Stage Investigator research and facilitate interactions with fellow investigators to highlight the translational potential of LAM basic research into the clinic. View Agendas and Register Now

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 TSC 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.