I'm very excited about a workshop I am attending next week. I've been invited to speak at Newborn Screening in Morocco in a city called Fes. After launching its first newborn screening pilot program in 2011, Morocco is starting to more regularly test newborns for a variety of conditions. An example is Phenylketonuria (PKU), which is a rare genetic disorder that can cause serious health problems, but can be controlled with a modified diet.
I'll be talking about software applications and data repositories that can be used to facilitate research into newborn screening and improve patient followup. 5AM Solutions has worked with the American College of Medical Genetics and Genomics on several such tools, including the Virtual Repository of Dried Blood Spots (VRDBS) and the Longitudinal Pediatric Data Resource (LPDR). (See 5AM case studies here and here.)
This is a great reminder that even though we sometimes complain about the health system in the United States, and the pace at which it changes, we take for granted a lot of services that are not so common in other parts of the world. I'll be writing another blog post when I return, and I'll let you know what I learn about newborn screening in Morocco.