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 firstname.lastname@example.org.
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
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
Because current data do not provide clear answers for many TSC patients’ questions, 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.
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…
Invitation to Provide Input to Shape Transformative Research Priorities and 2020 Epilepsy Research Benchmarks
How to join the NINDS Public Crowdsourcing Community Go to: https://ninds.ideascalegov.com You will be asked to register by providing an email address and a password (a unique password that you select) (your email will not be shown). Upon completing the registration process, go to your inbox to verify your email address by clicking on the link within the verification email sent to you (you may need to check your spam folder for the email). Click the link and input the verification code from your email to bring you inside the NINDS Community account, where you will set your password and then…
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.
A virtual event will take place Friday, November 13, 2020 focused on emerging research around TSC and COVID-19, and networking for early career researchers. 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