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. 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™
The TSC Alliance has partnered with NeurologyLive to bring healthcare professionals treating neurological disorders the latest in research and practice. Check out our partner page. Subscribe to NeurologyLive to stay up to date on clinical trial news, FDA updates and more. Subscribe
Register Your Interest in the International TSC Research Conference 2020
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. Learn More
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
COVID-19 Considerations for TSC Medical Professionals
UPDATE: The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (combatcovid.hhs.gov/). The portal is a one-stop resource to help members of the public and doctors find information about different stages of COVID-19 illness, NIH-supported COVID-19 prevention and treatment clinical trials, and locations to donate plasma. The website provides clear and easy-to-understand information for: People who have never had COVID-19 who may be interested in joining a vaccine or other prevention trial People who have COVID-19 and want to participate in a treatment clinical trial People who have…
Research Study on TSC and COVID-19
The TSC Alliance is collecting clinical information about individuals with TSC who were infected with COVID-19. Please circulate the following to your patients: The TSC Alliance is collecting clinical information in their TSC Natural History Database about individuals with TSC who were infected with COVID-19. TSC researchers will use 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 TSC Alliance TSC Natural History…
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.
Save the Date for the 2021 Virtual International TSC & LAM Research Conference
Mark your calendars now for the 2021 Virtual International TSC & LAM Conference, co-hosted by the TSC Alliance and The LAM Foundation, scheduled for October 28-30, 2021.
EPISTOP Results on Prevention of Epilepsy in TSC infants
EPISTOP (Long-term, prospective study evaluating clinical and molecular biomarkers of EPIleptogenesiS in a genetic model of epilepsy – Tuberous sclerOsis comPlex) is a European consortium that has been studying the potential benefits of early treatment with vigabatrin to prevent seizures in TSC. Trial results were just published in the Annals of Neurology.