An important and critical part of our Patient Registry Project’s success will involve Luna’s Community Driven Innovation program (CDI). We’ve already begun interviewing families to gather perspectives about the topics and issues most important to AGS families. With models produced by CDI, the AGSAA will be given approval by the Genetic Alliance Institutional Review Board (IRB) to move more quickly with surveys and questions for topics that will be considered to be of validated importance to AGS. With interviews in-progress, we expect to be able to share models in March!
