PPMD Listens. We have listened to patients, to families, to industry, and to providers. We have listened, and we have acted quickly and effectively, to help to improve your care.
- In 2012, after listening to what care and services patients and families were not receiving, we convened the first Transforming Duchenne Care meeting.
- In 2013, after listening to what patients and families wanted, needed, and deserved, we developed the Certified Duchenne Care Center Program.
- In 2014/15, so that families would have access to standardized optimal comprehensive Duchenne care and services, and would know where that care was being provided, we certified nine centers across the United States as Certified Duchenne Care Centers and posted that information online.
The network of Certified Duchenne Care Centers now includes:
- Nationwide Children’s Hospital
- Children’s Hospital Colorado
- Cincinnati Children's Hosptial Medical Center
- Seattle Children’s Hospital
- Kennedy Krieger Institute
- Massachusetts General Hospital
- Lucille Packard Children’s Hospital Stanford
- The University of Iowa Children’s Hospital
- Duke University Children’s Hospital and Health Center
We listened – and we responded. We heard your need for coordination and communication, cardiac care, pulmonary care, endocrine and bone health management, and neuromuscular care. We heard your need for an optimal level of care and service, standardized throughout network of centers spread across the United States, making this level of care accessible to everyone in the Duchenne community. We heard your need for centers with expertise that can act as references for other centers that may not have the same level of experience and expertise.
Each of the Certified Duchenne Care Centers has demonstrated to the certification committee that they are capable of providing the required highest level of care and services to patients and families living with Duchenne. And, by submitting annual Center Metrics, they continue to demonstrate their dedication to you and your families.
The centers and the certification committee have done their jobs - now we need your help. As you may know, there are 3 parts to the process of certification:
- The centers provide information through surveys
- The certification substantiates that information via site visit, interviews and chart review
- Patients and families substantiate that information via DuchenneConnect and the Clinical Experiences survey
If you, or your child, are receiving care at a Certified Duchenne Care Center, we need your help!
Each year, please register/update your information in DuchenneConnect. DuchenneConnect is PPMD’s patient reported outcome registry. By evaluating patient outcomes, we will know whether certain elements of care are making a difference. DuchenneConnect is also able to connect people living with Duchenne with clinical trials and research studies that they may qualify for. Registering, and updating information, in this registry is extremely important.
- Clinical Experiences Survey
Each year, please complete the Clinical Experiences survey. This very short survey will be used to evaluate, from the patient or parent perspective, the care and services that you are, or are not receiving. Answers that you provide will be compared with information provided by your center. It is our hope that the information provided by parents and patients will match and support information provided by the center. The survey is anonymous, and your answers will help to your center to continually improve the care and services provided to you and your family.
If you or your child is seen at a Certified Duchenne Care Center, and you are able to attend PPMD's 2015 Annual Connect Conference in Washington, D.C., Brian Denger will be available to help you complete the Clinical Experiences survey. Please find him in the lobby at any of the following times:
- Thursday 12 PM - 3:30 PM
- Friday 12:30 PM - 2:30 PM
- Saturday 8:00 PM -10:30 PM
With more centers, in the US and abroad, applying for certification, this effort will continue to be a top priority. PPMD will continue to listen to the needs of the Duchenne community and respond. But we need your voice to make this happen.