The global Duchenne community will come together on September 7 for World Duchenne Awareness Day. This year a theme was chosen that is not only critical to changing the diagnostic odyssey for people with Duchenne…it is a theme that the PPMD team believes strongly in: the importance of early diagnosis.
In this blog series leading up to World Duchenne Awareness Day, you will hear from PPMD team members about the ways we are changing the landscape in an effort to promote early diagnosis, and how you can help us tell the world about Duchenne on September 7!
PPMD has long realized that comprehensive care and services are required for maintaining both quality and quantity of life. In order to make comprehensive Duchenne care available and accessible to families across the US, and to let families know where they might access this level of care, PPMD has developed the Certified Duchenne Care Center Program. With a list of required medical care providers and services available at every CDCC, families can be assured that they are receiving comprehensive Duchenne care of the highest quality at each and every center. PPMD currently has 11 Certified Duchenne Care Centers across the US, with 7 additional centers working hard to meet the requirements for certification.
We are thankful that there are so many new developments on the horizon – we now have real hopes for newborn screening, novel therapies, new devices, and combination therapies. Now it is more important than ever for families to have access to Certified Duchenne Care Centers with expertise and experience in Duchenne, who recognize all of the nuances of this complicated diagnosis, and with multidisciplinary care and services that can work across the spectrum of disease to manage everything that each of these new developments will entail.
We know that for years, patients and parents have had the arduous task of coordinating care, services, and appointments. One of the core members of the Certified Duchenne Care Center team is the center coordinator. While this is not always the person who actually makes the appointments, this is the person who can help organized care and services so that appointments can be made with the families needs and wants in mind. This is also the person who maintains communication within the team, as well as between you/outside providers and the team, and is your "point person" for questions and concerns, both during appointments and in between visits. This is the person families should contact if care (emergency care or other care) is provided between Certified Duchenne Care Center visits – making sure that everyone is aware of what is happening with you/your child makes coordination much easier, so be sure and keep them up to date!
Duchenne is a complex disease, which means that a complex list of medical providers is needed for comprehensive care. PPMD has worked closely with the global community to develop the Imperatives for DUCHENNE MD (download) to develop a one-page list of the comprehensive care and services needed to care for people living with Duchenne. The Imperatives are based on the CDC “Care Considerations,” which were published in 2010. Some of the members of our PPMD team are now working with the CDC to update those recommendations. The updated guidelines will come out fall 2016 – when that happens, the Imperatives for DUCHENNE MD will need to be updated. We will make sure that you have access to the newest and most complete recommendations for Duchenne care and services.
In order to make sure that you are happy with the care and services at your Certified Duchenne Care Center (or wherever you receive care), we need and appreciate your feedback! Completing the Clinical Experiences Survey each year will let PPMD know that you are happy with the care and services you are receiving, or will provide us with your thoughts about what issues and concerns need to be addressed. You are an important part of maintaining the quality of care and services that you deserve, and that PPMD wants to be sure that you are receiving.
Duchenne is complex and Duchenne care is complex. Together we can make sure that every family is getting the highest level of coordinated comprehensive care and services.
September 7 is World Duchenne Awareness Day!