For Healthcare Providers
Care for people living with Duchenne includes a multidisciplinary team of professionals providing coordinated, comprehensive care. While the Duchenne Care Considerations offer details of the surveillance and management of each medical subspecialty area of care, PPMD has additional tools and resources that may be helpful to you. Please let us know if there are tools and/or resources that you do not see, that you feel might be helpful.
PPMD Programs & Resources
PPMD’s Duchenne Professionals Masterclass
PPMD’s Duchenne Professionals Masterclass features a comprehensive curriculum covering basics through advanced concepts for the Duchenne professional community. PPMD is pleased to offer ten stand-alone courses to allow the professional to create a customized curriculum meeting the learner’s unique educational needs, spanning from new-to-Duchenne professionals to seasoned experts in the field. Participants are eligible to receive continuing education credit upon successful completion of each course (please see individual courses for more information).
Healthcare professionals caring for patients with Duchenne may be eligible for discounted pricing for PPMD’s Duchenne Professionals Masterclass and associated continuing education credits. Please contact us for more information.
Certified Duchenne Care Centers
PPMD’s network of Certified Duchenne Care Centers are centers that are capable of providing comprehensive Duchenne care in agreement with the Care Considerations (see ‘Caring for Duchenne’, below). Each of these centers include sub-specialists with Duchenne expertise across the spectrum and lifespan of the disease. These centers exist as a resource to both you and your families. If you need assistance in accessing the Certified Duchenne Care Center network, a center in your area, or have questions/need resources that you are having difficulty accessing, please contact PPMD.
Is your center interested in becoming a Certified Duchenne Care Center? Review the CDCC Program Requirements for Care and Services (PDF) to determine your eligibility. To learn more about PPMD’s Certified Duchenne Care Center Program, please contact Rachel Schrader at Rachel@ParentProjectMD.org.
Decode Duchenne: Genetic Testing & Counseling
PPMD’s Decode Duchenne provides free genetic testing and counseling to people with Duchenne or Becker muscular dystrophy and eligible family members. The application and testing process is fast and easy, and includes interpretation of results and counseling. Learn more about PPMD’s Decode Duchenne program.
The Duchenne Registry
The Professional Portal of The Duchenne Registry is designed for researchers, clinicians, policymakers, and industry professionals. Key features include:
- Access to data from The Duchenne Registry
Registered professionals have access to de-identified aggregate data from The Duchenne Registry. Registered professionals can also perform basic searches of the Registry in order to identify target populations for trial/study planning and recruitment.For more advanced searches of the Registry data, or to obtain raw exports of the Registry data, please contact the Duchenne Registry Coordinators at coordinator@duchenneregistry.org or 888-520-8675. - Access to recruitment services through The Duchenne Registry
A key goal of the Registry is to assist clinicians, researchers and pharmaceutical companies in developing new clinical trials and research studies for Duchenne and Becker and recruiting for those trials/studies. The Registry Coordinator can target select subpopulations within the Registry who appear to match inclusion criteria for a specific trial/study. Learn more.
Please note that all trials/studies must be IRB-approved or human subjects/ethics committee-approved. For more information about our recruitment services, please contact the Duchenne Registry Coordinators at coordinator@duchenneregistry.org or 888-520-8675.
Insurance Access and Coverage Resources
We have all had frustrations getting healthcare paid for, whether it is getting access and coverage for appointments, procedures, equipment, and/or medications. Coverage is especially difficult when new medicines or procedures are recommended. Parents, patients, and medical providers spend hours putting together documents and speaking on the phone trying to convince payers that this is what is needed to keep us, our children, or our patients, as healthy as possible. To make this process easier, PPMD has assembled resources that will help families and medical providers at each stage of the healthcare access process. Click here for a road map aimed at guiding you through this complex process – complete with sample letters of medical necessity and letters of appeal for both durable medical equipment (DME) and approved medications, as well as links to relevant publications and other resources.
