We’ve seen some steady growth in registry enrollment since May, with new participants joining from all around the world. We now have an IRB approved protocol and study with the flexibility to explore topics that have been validated as important and meaningful to AGS families. As such, we’ll be reporting our numbers a bit differently, indicating the number of participants within our Luna community and the number of participants that have consented to our registry study/protocol. In the future we may introduce very narrowly scoped and specific studies for collaborating with scientists, and everyone within the community will be given the choice of whether to join irrespective of their participation in our registry study.
If you find it confusing… so do we! We at the AGSAA continue to learn and practice administration of surveys and analysis. We’re learning from others as we go and planning some interesting ways to engage our community. Stay tuned for more community led exploration and opportunities for families to own questions and answers.
