The NIH has released a one month survey in order to enroll people with rare conditions and look at whether their condition predisposes to more or less severe symptoms during a COVID-19 infection. They are specifically seeking participants with CADASIL who have and also who have not had COVID-19. The survey will take approximately 30 minutes to complete. A follow-up survey in 6 months will be sent for additional members of your household to also participate. This provides doctor more information on how rare disease households are being affected during the pandemic. English and Spanish versions of the survey are available. If other languages are needed, please email COVIDinCommunities@nhlbi.nih.gov.
This study is being led by Dr. Beth Kozel, MD, PhD who has previously collaborated with cureCADASIL, Please see a recent NIH post about Dr. Kozel and this study:
https://www.nhlbi.nih.gov/news/2020/nih-mobilizes-resources-expertise-address-various-dimensions- covid -19-0
To take the survey, visit:
We are looking forward to hearing from as many members of the CADASIL community as possible regardless of if you have or have not had COVID-19. Dr. Kozel and her team hope to have 500 CADASIL participants! The survey will close at the end of October 2020.