Right now, Annie Kennedy and I are sitting in a room, in Atlanta at the Centers for Disease Control and Prevention (CDC), with a group of experts in Duchenne from around the world. It is the culmination of 2-year effort and we are delighted that soon we will be able to share the yield of this global collaboration with you. Pretty amazing.
As you know, the publication of the original Duchenne care guidelines was one of provisions of the MD-CARE ACT in 2001. These guidelines - known as the Duchenne Care Considerations - were first published in 2 volumes of Lancet Neurology in 2010 and were the first standardized care guidelines for Duchenne.
Since that time, much scientific progress has been made in Duchenne and much has changed in many areas of care, necessitating an update of those guidelines. There has been the generation of new knowledge, a moderate degree of new evidence, and many changes in expert management of care. As part of the MD-CARE Amendments Act of 2014 that our PPMD community helped lead passage of last fall, CDC was called upon to update the existing Duchenne Care Considerations.
What will be included in the updated Care Considerations?
Specifically, the new Care Considerations are being expanded to include bone health, GI, primary/emergency care, and transitions. In addition, the new guidelines will include lifelong recommendations for care, as the majority of our Duchenne community will transition from pediatric to adult care and the previous guidelines focused specifically on pediatric care. The newly updated Care Considerations will include recommendations for surveillance and management of all areas of care from the day of diagnosis.
Each of the contributors is passionate about our families and community. This team has extraordinary depth within their areas of expertise, are committed to enhancing and optimizing quality of life, and extending life span. All of the areas have been updated and new areas added, inclusive of as much evidence as is available and supplemented with in-depth discussions and recommendations of many other experts in the same area. The goal of each member of the group is to continue to bring the best care to people and families living with Duchenne.
Right now we are very busy developing the best guidelines possible for comprehensive Duchenne care. But we will let you know as soon as these new guidelines are out!