This morning we are launching our first patient registry AGS specific surveys. Technically, this is also the launch of our AGS specific patient registry study. All of our previous enrollment and registry activity has been about creating accounts, familiarizing ourselves with the Luna platform, and collecting basic demographic information. This morning, we’re starting our investigation into the safety of COVID-19 vaccination in AGS (Read More), and in the coming days we will include an investigation into the severity of COVID-19 in AGS individuals.
In order to collect information that could help us investigate the safety of COVID-19 vaccines, we’ve prepared two additional surveys to help us contextualize the results, including questions about immunosuppressive treatment and AGS severity and genotype. You may recognize our “phenotyping” survey as Dr. Laura Adang’s AGS Scale. Altogether, it should take no longer than 5 minutes.
The Aicardi-Goutieres Syndrome Registry
For the Collection of Information to Facilitate and Advance Better Care and Research.
Now that we’ve received approval from Genetic Alliance to launch, our AGS community can participate in the AGS registry study. Our surveys and data collection requests will roll out within this study. Even if you have created accounts in Luna, you may be asked to enroll and consent to this study managed by the AGSAA.
