Following up on our efforts to model the AGS community’s most important concerns (AGS Community Driven Innovation and the Patient Registry), we’ve launched a survey that requests all members of our patient registry to select their top 5 topics from a long list developed through interviews with AGS families.
The AGSAA has been working with Luna and a number of AGS families to develop a model of the community's top concerns and topics. We started this project in February, and you can learn a little more on our blog (https://agsaa.org/news/2022/2/27/ags-community-driven-innovation).
Luna has developed a long list of concepts that continually surfaced in interviews with AGS families. Now we need the larger community to each select their top 5. Your feedback will help the AGSAA understand the community's needs better, and our institutional review board will allow us to explore these top concerns more quickly with our patient registry. The aim of this survey is to quickly surface trends, so please take less than a couple minutes. Select/drag any topic that jumps out at you, and don't worry or agonize about getting it right.
Here’s an example of what it looks like. A single question that should only take a few moments. Head over to the AGS Patient Registry to participate
