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 get details about participating, please contact Jo Anne Nakagawa at firstname.lastname@example.org or 1-800-225-6872 or 240-638-4654 (direct voicemail). Thank you.
COVID-19 Considerations for TSC Medical Professionals
Because current data do not provide clear answers for many TSC patients’ questions, 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.
The TS Alliance also developed a letter template physicians can use for their patients who are having trouble with their insurers paying for 90-day supply of their medications.
You can see all of the TS Alliance’s COVID-19 resources.