Next Step for the Patient Registry, a COVID/Pandemic Study

We’d like to thank everyone that has enrolled in the AGS Patient Registry! We’re writing a COVID/Pandemic study now to catalog, among a few other things, experiences with COVID infection and vaccines in AGS. This information will be invaluable to AGS families that have been forced to navigate a difficult pandemic with fears of dangerous comorbidities and a disease stimulated by viruses and (potentially) by COVID vaccines. Based on community feedback, we’ll begin by collecting data about outcomes with COVID vaccines to help build a risk/safety profile that will go along with Dr. Adeline Vanderver’s in vitro experiments with AGS tissue samples and mRNA vaccines.

Have you joined our Facebook Group? AGS families use this group to keep up with information, tips, suggestions, etc. and to talk with the few other people that really understand what living with AGS is like.

Patient Registry Enrollment Picks Up Speed!

Thank you to everyone that has created accounts and consent to the AGS Patient Registry. We’re thrilled by the progress in the first week or two. We’ve already surpassed our original goal of enrolling 50 AGS individuals. By enrolling early, you’ve given us the freedom to focus on insights over recruitment. Thank you!

AGSAA, Biogen, LunaPBC, and Genetic Alliance Launch Community-Led Discovery Program for Aicardi-Goutières Syndrome

Many of you may already know that we recently launched an AGS patient registry, and we’re actively working with our partners to develop studies and gather insights. This morning we jointly published a press release to let everyone know of our promising collaboration.

“With committed community engagement and thoughtful stewardship of our data, we will finally have what we need to tell our story and begin to write a different ending.”

— Devon Cordova, Vice President, AGSAA

AGS Patient Registry

We are so incredibly excited to announce the launch of the AGS Patient Registry. The AGSAA has partnered with Luna and Genetic Alliance to put our community in the driver’s seat while we race to advance policy, medicine, and AGS care. In AGS as in other rare diseases, our stories are our superpower!