Have You or Your Loved One with TSC Been Diagnosed with COVID-19?
The TSC 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 TSC Alliance TSC Natural History Database. The TSC 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 TSC 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 firstname.lastname@example.org or 1-800-225-6872 or (240) 638-4654.