fbpx

TSC Matters

Have You or Your Loved One with TSC Been Diagnosed with COVID-19?

The TS Alliance is reaching out to individuals with TSC who had COVID-19 infection to collect information in the TSC Natural History Database. TSC researchers will be using this information to help determine how medications such as everolimus (Afinitor®, Zortress®) or sirolimus (Rapamune®) and TSC conditions affect the risk of getting COVID-19 and its severity.

If you or a family member with TSC had COVID-19 confirmed by testing, please consider participating in the TS Alliance TSC Natural History Database. The TS Alliance and the TSC Clinics listed below are collecting this information.

State TSC Clinic Principal Investigator
AL University of Alabama Birmingham E. Martina Bebin, MD, MPA
CA UCSF Benioff Children’s Hospital Oakland Ali Mostajelean, MD
CA Loma Linda University Medical Center Stephen Ashwal, MD
CA UCLA Joyce Wu, MD
CO Children’s Hospital Colorado Susan Koh, MD
D.C. Children’s National Medical Center, Washington DC William McClintock, MD
FL Nicklaus Children’s Hospital Miami Ian Miller, MD
IL University of Chicago James Tonsgard, MD
MA Boston Children’s Hospital Mustafa Sahin, MD, PhD
MA Herscot Center for TSC at MGH Elizabeth A. Thiele, MD, PhD
MN Minnesota Epilepsy Group Michael Frost, MD
MO Washington University St. Louis Michael Wong, MD, PhD
NY NYU Langone Medical Center Josiane LaJoie, MD
OH Cincinnati Children’s Hospital Medical Center Darcy Krueger, MD, PhD
OH The Cleveland Clinic Ajay Gupta, MD
PA The Hospital of the University of Pennsylvania Katherine Nathanson, MD
TX Texas Scottish Rite Hospital for Children Steven Sparagana, MD
TX The University of Texas Health Science Center Houston Hope Northrup, MD

 

Participation in the TS Alliance TSC Natural History Database is voluntary. Please ask your TSC clinic to enroll you in the TSC Natural History Database if you are not already enrolled. If you or your loved one had COVID-19 confirmed by testing and do not go to one of the TSC Clinics listed or have questions, please contact Jo Anne Nakagawa at jnakagawa@tsalliance.org or 1-800-225-6872 or (240) 638-4654.