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TSC Alert

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 Natural History Database.

To get details about participating, please contact Jo Anne Nakagawa at jnakagawa@tscalliance.org, 1-800-225-6872 or 240-638-4654 (direct voicemail).  Thank you