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.

Additional Continuing Education Resources with PPMD

Duchenne Muscular Dystrophy: Recognizing Its Earliest Signs in Infancy and Care Transition into Adulthood

PPMD and the National Organization for Rare Disorders (NORD) are happy to present a free CME program produced in partnership with PlatformQ Health on the subtle and early signs of Duchenne that may be detected before functional symptoms. Access this on-demand video to hear from a panel of experts on early identification and benefits of early diagnosis.

Join Dr. John Brandsema and Dr. Emma Ciafaloni as they review the importance of early identification, matching mutations to therapeutic decisions, discuss emerging concepts around functional and non-functional outcomes of treatment success, and share strategies to optimize care related to mood, bone health, and transitions from pediatric to adult care.

A New Age of Duchenne Muscular Dystrophy Management—Promoting Effective Transitions From Pediatric to Adult Care

PRIME Education presents Dr. John Brandsema and Dr. Linda Cripe who discuss diagnostic strategies and evidence-based treatment and management of patients throughout the Duchenne care continuum, including best practices for effective pediatric to adult care transitions. You can access the 45 minute on-demand video by clicking here.

This activity is provided by PRIME Education and delivered in partnership with the Muscular Dystrophy Association and PPMD. The activity is eligible for Continuing Education Credits.

Patient Education Materials

PPMD is happy to provide your clinic with patient care materials to help better support and educate families on Duchenne & Becker muscular dystrophy. You can find a list of downloadable PDF files of our education materials on our Support & Care Materials page. We also have a list of Spanish materials available as well. If you would like hard copies of any of these materials, please reach out to careteam@parentprojectmd.org or click here to order.

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 email careteam@parentprojectmd.org.

If your center is interested in becoming a Certified Duchenne Care Center, please email careteam@parentprojectmd.org to determine eligibility or schedule a time to meet here.

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.

Over the past 15 years, data from The Duchenne Registry has been exported and shared with researchers nearly 65 times and used in 13 publications have used data from The Duchenne Registry. PPMD’s Registry team has also used the data to identify and connect individuals with Duchenne and Becker to over 80 actively recruiting clinical trials and over 100 non-interventional research studies.

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.