by: Parent Project Muscular Dystrophy
Every single person living with Duchenne deserves the best care possible. It is important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized care and services in agreement with the Duchenne Care Guidelines.
PPMD’s Certified Duchenne Care Center (CDCC) Program helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines. All CDCCs have met the requirements for, and agree to provide, optimal standardized care and services.
2022 Program Highlights
2022 was a busy year for the Certified Duchenne Care Center program and PPMD’s Care Team. With the return of safe travel, PPMD’s Rachel Schrader, VP of Clinical Care and Education, and Dr. Mena Scavina, CDCC Program Advisor, hit the road and completed countless long-awaited site visits for hopeful CDCC clinics across the country. As a result, the CDCC program grew in 2022 to include the addition of eight new clinics, including:
- Monroe Carrell Jr. Children’s Hospital at Vanderbilt University Medical Center (Nashville, Tennessee)
- Helen DeVos Children’s Hospital at Spectrum Health (Grand Rapids, Michigan)
- Pittsburgh Children’s Hospital at University of Pittsburgh Medical Center (Pittsburgh, Pennsylvania)
- Billings Clinic (Billings, Montana)
- St. Louis Children’s Hospital at Washington University (St. Louis, Missouri)
- Stony Brook Children’s Hospital at Stony Brook Medical Center (Stony Brook, New York)
- Riley Children’s Health (Indianapolis, Indiana)
- Phoenix Children’s Hospital (Phoenix, Arizona)
The additions to the CDCC program include coverage of an additional 900 people living with Duchenne and Becker and represents six new states now included in the network of clinics, expanding the reach of comprehensive, coordinated care for people living with dystrophinopathy.
In total, PPMD’s CDCC Program is thrilled to serve more than 4,600 people living with Duchenne and Becker at 36 Certified Duchenne Care Centers in 22 states and the District of Columbia.
While the CDCC program has grown exponentially in 2022, many clinics are currently awaiting site visits or are currently in the certification pipeline. PPMD is excited to continue to grow and enhance the program in 2023 to expand our reach even further, with the ultimate goal of bringing comprehensive, coordinated care to every single person living with Duchenne or Becker, regardless of where they live.
The Community Voice is Critical
Your voice is a critical component to the continued excellence of care provided at centers within the CDCC network. One way to get involved is the annual completion of the Clinical Experiences Survey.
This survey lets the CDCC Certification Committee know what elements of care and services you receive, what is going well, and where PPMD can help advocate for improvement in the delivery of care and services at your center. Responses are collated per center, and at the end of the year, each center receives an anonymized report of their own center, as well as one representative of the network as a whole. This supports centers in the process of continuous improvement to ensure you receive the best care possible.
Your voice is an integral part of this process! Complete the survey here.
Leveraging Our Network, Advancing Duchenne Care
PPMD was thrilled to convene the 2022 Cardiac Care Meeting in Charleston, South Carolina in March. Over 80 cardiologists, researchers, industry leaders, and federal employees came together to dive into the current state of cardiac care in Duchenne and explore how we can advance cardiac care through collaboration and partnership. An accompanying first-ever Cardiac Town Hall at the 2022 PPMD Annual Conference brought themes from this revolutionary meeting directly to the community, ensuring that learnings and future aims identified from the meeting were broadly disseminated to the Duchenne community.
This meeting led to a $2 million award to ACTION with the goal of advancing cardiac care for all people living with dystrophinopathy, including Duchenne, Becker, and women carriers.
Complementary to PPMD’s Cardiac and Carrier Initiatives, we were also excited to launch a brand new pilot carrier clinic for women carriers of Duchenne at University of Pennsylvania. Under the guidance of PPMD’s Dr. Mena Scavina and UPenn leadership of Dr. Teresa Wang, PPMD is excited to invest in the continued development of carrier care and learnings from the UPenn pilot, with the ultimate goal of driving forward carrier care to someday include carrier standards of care.
The team was also thrilled to gather alongside community members at the 2022 Annual Conference in person for the first time since 2019! The team brought topics to the community for discussion and learnings including the first ever Becker track, emergency care, caring for the caregiver, cardiac care, facilitating independence and more. Registration for PPMD’s 2023 Annual Conference in Dallas, Texas is now open.
The team was also delighted to use the annual conference to launch the new THINK campaign, which through a host of new tools, ready-to-order resources, and web-based information empowers families to approach emergency situations with easy-to-follow resources. As always, materials are available to order free of charge here.
Looking Ahead to 2023
It’s full steam ahead for the CDCC Program and affiliated initiatives, projects, and programs at PPMD. We were pleased to host the 2023 Duchenne Healthcare Professionals Summit, a Duchenne-specific, professionals-only meeting this past January which brought forth collaboration and communication amongst Duchenne professionals across the country. We were also excited to hold a follow-up Cardiac Care Workshop in Spring 2023 with a goal of driving forward cardiac care and establishing updated cardiac care guidelines for people living with Duchenne and Becker. And of course, we will continue to grow the CDCC Program with new site visits and certifications.
PPMD is Here For You!
Do you have a question, or want to see us dig into a specific topic deeper, whether by blog, webinar, or in-person meeting? We want to hear from you! Send us an email at CareTeam@parentprojectmd.org and share with us how we can better serve you.
Interested in scheduling time with one of PPMD’s Care Team members to talk through your questions about new diagnosis, care, education, transition, and more? Schedule time on our calendar here or send us an email.
2022 ANNUAL REPORT FOR CDCC MEMBER CENTERS
The table below describes the 2022 annual report for each center.
| Center | Date of Certification | Certification Type | Director(s) | Coordinator | # Duchenne/ Becker patients | In Good Standing | Notes |
|---|---|---|---|---|---|---|---|
| Akron Children's Hospital | 2020-06-16 | Pediatric | Kathryn Mosher (PM&R) | Noelle Buso, MSW | 50 | yes | |
| American Family Children's Hospital | 2018-09-01 | Pediatric | Jennifer Kwon (Neurology) | Cory Sieburg APNP | 31 | yes | |
| Ann and Robert H. Lurie Children's Hospital | 2016-12-01 | Pediatric | Nancy Kuntz (Neurology) | Kristen Alianello | 170 | Yes | |
| Arkansas Children's Hospital | 2019-10-01 | Pediatric | Aravindhan Veerapandiyan (Neurology) | Tiffany Boyd RN | 100 | yes | |
| Billings Clinic | 2022-06-01 | Pediatric | Elizabeth "Lynn" Wood (Neurology) | Shelly Eagen NP | 15 | yes | New certification for 2022 |
| Children's Hospital Colorado | 2014-06 (2019-06) | Pediatric | Sue Apkon (PM&R) | Alison Ballard CPNP Hattie Foster RN | 180 | yes | Departure of Julie Parsons, addition of Michele Yang to weekly neuromuscular clinic |
| Children's Hospital of the King's Daughters | 2019-01-29 | Pediatric | Crystal Proud (Neurology) | Erika Paradiso RN and Tanicia Johnson RN | 73 | yes | |
| Children's Hospital Los Angeles | 2016-03-01 (2021-90/24) | Pediatric | Leigh Ramos-Platt (Neurology) | Arlene Deseo RN | 200 | yes | |
| Children's Hospital of Richmond VCU | 2019-08-01 | Pediatric | Amy Harper (Neurology) | Suzanne Spivey | 70 | yes | |
| Children's Hospital Wisconsin | 2018-11-06 | Pediatric | Matthew Harmelink (Neurology) | Clare Aoys | 48 | yes | Addition of Dr. Nancy Bass to clinic |
| Children's Medical Center Dallas/UTSW | 2020-04-29 | Pediatric | Susan Iannaccone (Neurology) and Kaitlin Batley (Neurology) | Connie Choudhury RN | 183 | yes | Departure of Dr. Diana Castro; addition of Dr. Kaitlin Batley as co-director |
| Children's Mercy Hospital | 2016-03-01 | Pediatric | Brian Birnbaum (Cardiology) and Mark Fisher (PM&R) | Baleigh Haag RN | 85 | yes | New clinic coordinator, Baleigh Haag |
| Children's National Hospital | 2014-11-01 | Pediatric | Diana Bharucha Goebel (Neurology) | Kathleen Smart | 52 | yes | |
| Cincinnati Children's Hospital Medical Center | 2014-06 (2019-06) | Pediatric | Cuixia Tian (Neurology), Mary McMahon (PM&R) | Beth Dupont RN, Lisa Reebals CNP | 418 | yes | New clinic coordinator, Beth Dupont |
| Duke Children's Neuromuscular Center | 2015-06-01 | Pediatric | Edward Smith (Neurology) | Tricia Sexton RN | 188 | yes | |
| Helen DeVos Children's Hospital | 2022-04-01 | Pediatric | Jena Krueger (Neurology) | Lauren Frans RN and Amy Tolliver NP | 60 | yes | New certification for 2022 |
| Kennedy Krieger Institute | 2014-11 (2019-11)/ 2020-04-01 (Adult) | Dual | Jessica Nance (Neurology) and Doris Leung (Neurology) | Angie Lasseth, Michael Munchel | 250 | yes | |
| Lucile Packard Children's Hospital Stanford | 2015-03-01 | Pediatric | John Day (Neurology) | Jessica Guzman RN | 140 | yes | |
| Monroe Carrell Jr. Children's Hospital, Vanderbilt University Medical Center | 2022-02-16 | Pediatric | W. Bryan Burnette (Neurology), Jonathan Soslow (Cardiology), Andrew Sokolow (Pulmonology) | Haleigh Oden Southern RN, Kali Barbalena | 200 | yes | New certification for 2022 |
| Nationwide Children's Hospital | 2014-04 (2019-04) | Pediatric | Kevin Flanigan (Neurology) and Megan Waldrop (Neurology) | Shannon Chagat NP | 515 | yes | |
| Nemours Children's Health | 2017-08-01 (2022-09-06) | Pediatric | Mena Scavina (Neurology) | Jennifer Hultberg | 79 | yes | Recertified in 2022 |
| Phoenix Children's Hospital | 2022-11-01 | Pediatric | Saunder Bernes (Neurology) | Lauren Kane RN | 126 | yes | New certification for 2022 |
| Pittsburgh Children's Hospital | 2022-07-16 | Pediatric | Hoda Abdel-Hamid (Neurology), Jane Taylor (Pulmonology) | 120 | yes | New certification for 2022 | |
| Riley Children's Health | 2022-09-06 | Pediatric | Marcia Felker (Neurology) | Debbie LeMay RN | 135 | yes | New certification for 2022 |
| Seattle Children's | 2014-09 (2019-09) | Pediatric | Seth Perlman (Neurology) and Jaclyn Omura (PM&R) | Siserra Taylor | 130 | yes | |
| St. Louis Children's Hospital at Washington University | 2022-07-01 | Pediatric | Craig Zaidman (Neurology) | Leslie Rodick RN, Natalie Goedeker NP | 225 | yes | New certification for 2022 |
| Stony Brook Children's Hospital | 2022-07-27 | Pediatric | Peter Morelli (Cardiology) | Dawn Dawson NP | 25 | yes | New certification for 2022 |
| UC Davis | 2017-01-01 | Pediatric | Craig McDonald (PM&R), Nanette Joyce (PM&R) | Erica Goude, Tanya Escay RN | 327 | yes | |
| UCLA | 2016-03-01 | Pediatric | Stan Nelson (Genetics), Perry Sheih (Neurology), Nancy Halnon (Cardiology) | Jennifer Koo RN | 130 | yes | |
| UCSF Benioff Children's Hospital | 2017-11-01 | Pediatric | Jonathan Strober (Neurology) | Audrey Glancy RN | 44 | yes | |
| University of Iowa | 2015-02-01 | Pediatric | Katherine Mathews (Neurology) | Christina Trout RN, MSN | 120 | yes | |
| University of Missouri | 2019-09-01 | Adult | Vovanti Jones (PM&R) | Amanda Hueffmeier, Natalie Taylor | 22 | yes | |
| University of Rochester | 2019-02-11 | Pediatric | Emma Ciafaloni (Neurology) | Deb Guntrum FNP, Erin Collins | 120 | yes | |
| University of Utah/Primary Children's Hospital | 2019-04-26 | Pediatric | Russell Butterfield (Neurology) | 105 | yes | ||
| University of Virginia Children's Hospital | 2018-11-28 | Pediatric | Rebecca Scharf (Neurodevelopmental Pediatrics and Neurology) | Lorie Nouwairi RN, Chelsea Masterson | 55 | yes | |
| Yale New Haven Children's Hospital | 2016-12-01 (2022-02/10) | Pediatric | Cristian Ionita (Neurology) | Louise Lanouette | 42 | yes | Recertified in 2022 |
