Are you represented in the AGS patient registry? If you’re outside of the United States, chances are that you’re not. We encourage everyone to participate, but we recognize that the language barrier may make it difficult. Our registry software has translation limitations that we will continue to work on. Still, we have lots of missing data for those of you that have participated. Please try to complete all of the surveys so that we can better characterize the community. We’ve begun writing a survey to explore triggers and flares, and we will need much of this basic demographic data complete to interpret the results.
We have 112 members that have created accounts and joined our AGSAA Community in Luna. Of that group, 41 have joined our registry study and completed at least one survey. By far, we have had the highest engagement in our COVID-19 investigations. We’ve submitted data and experiences from our registry to publish alongside lab experiments done by the Children’s Hospital of Philadelphia to investigate the safety of COVID-19 vaccination in AGS. We’ll share as soon as it’s published or we have an open pre-print available!
About half of our active participants still have some basic surveys to complete, so we lack data about their country of residence, age group, genotype, and medication/therapy status. We request that everyone get these out of the way because they allow us to characterize participants and take a deeper look at how certain details affect their experiences (e.g. whether genotype affects safety of COVID-19 vaccination). Nonetheless, we have participants in multiple countries, all age groups, and with most AGS genotypes.
We’ve also computed scores for participants using the AGS Scale (doi: 10.1016/j.ymgme.2022.03.010). This quick survey developed by the Children’s Hospital of Philadelphia characterizes the neurological severity of AGS in individuals. So far, we see that our registry represents the spectrum of AGS pretty well. We want to avoid bias in our registry and insights, so please help us by completing this survey to ensure that we consider everyone!