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PubMed This is a summary of 20 peer-reviewed journal articles Updated
Neurology

Assembling Your Multidisciplinary DMD Care Team

At a Glance

The gold standard for managing Duchenne muscular dystrophy is a multidisciplinary care clinic. Because DMD affects multiple body systems, a coordinated team including a neurologist, cardiologist, and pulmonologist ensures treatments are balanced and your child receives comprehensive, safe care.

Managing Duchenne Muscular Dystrophy (DMD) is too complex for any one doctor to handle alone. Because DMD affects multiple systems in the body—including the muscles, heart, lungs, and bones—the gold standard of treatment is a multidisciplinary care model [1][2].

Research shows that families who receive care through a coordinated neuromuscular clinic have better clinical outcomes and improved quality of life compared to those who navigate fragmented “piecemeal” care [3][4].

Why a Multidisciplinary Clinic?

In a dedicated DMD clinic, the specialists don’t just work in the same building; they talk to each other about your child. This prevents conflicting advice and ensures that treatments for one system (like steroids) are balanced with the needs of another (like bone density) [2][5].

Your “Roster” of Experts

A comprehensive team typically includes the following core specialists:

  • Neurologist: Often the “quarterback” of the team. They monitor muscle function, manage medication schedules (like steroids), and track functional milestones [5][6].
  • Cardiologist: The heart is a muscle, and early monitoring is vital. They use tools like Cardiac MRI to detect early changes in the heart long before symptoms appear [7][8].
  • Pulmonologist: They monitor lung strength through Pulmonary Function Tests (PFTs). They ensure your child can breathe deeply and cough effectively to prevent infections [9][10].
  • Physical Therapist (PT): Unlike traditional PT, DMD-specialized PT focuses on preservation. They create stretching routines to prevent contractures (tightened joints) and advise on mobility aids [11][12].
  • Endocrinologist: If your child is on steroids, an endocrinologist monitors growth, weight, and bone health to prevent issues like vertebral fractures [13][14].
  • Orthopedist: They monitor the spine for scoliosis and provide guidance on managing bone health or surgical needs if they arise [14][15].

Preparing for the First Visit

The first multi-specialist visit can be long and emotionally draining. To make the most of it, bring the following “artifacts” in a dedicated binder or digital folder:

  1. The Full Genetic Report: This is the most critical document, as it determines which precision treatments your child can receive [16][17].
  2. CK Level Results: Bring the original blood work showing the high Creatine Kinase levels [18].
  3. Growth Charts: Any previous height and weight records from your pediatrician.
  4. A List of Current Medications: Include dosages for any vitamins or supplements.
  5. A Video: A short video of your child walking, running, or getting up from the floor can be incredibly helpful for the PT and neurologist [19].

How to Vet a Care Center

Not every hospital has a dedicated DMD team. To ensure your child is receiving the highest level of care, ask these three vetting questions:

  1. “Does your center follow the 2018 CDC DMD Care Considerations?” (This ensures they are using current international standards) [2].
  2. “Is your clinic certified by Parent Project Muscular Dystrophy (PPMD) or the Muscular Dystrophy Association (MDA)?” (These certifications require clinics to meet strict quality benchmarks) [20].
  3. “Will all of our key specialists communicate their notes to each other after this visit?” (This checks for true multidisciplinary coordination).

By building a team of experts who specialize in Duchenne, you are ensuring that your child has the most advanced “safety net” possible [1].

Return to the Home Page.

Common questions in this guide

What kind of doctors do we need for a DMD care team?
A comprehensive Duchenne care team is usually led by a neurologist and includes a cardiologist, pulmonologist, physical therapist, endocrinologist, and orthopedist. These specialists work together to monitor your child's muscles, heart, lungs, and bone health.
Why is a multidisciplinary clinic better for Duchenne care?
In a multidisciplinary clinic, specialists communicate with each other to coordinate your child's care. This prevents conflicting medical advice and ensures that treatments for one part of the body do not negatively impact another.
What should I bring to my child's first DMD clinic visit?
You should bring your child's full genetic report, original CK level blood work, growth charts, and a current medication list. It is also very helpful to bring a short video of your child walking, running, or getting up from the floor for the doctors to review.
How can I tell if a hospital provides high-quality DMD care?
You can ask if the center follows the 2018 CDC DMD Care Considerations and if they are certified by Parent Project Muscular Dystrophy (PPMD) or the Muscular Dystrophy Association (MDA). Certified centers are required to meet strict quality benchmarks for patient care.
How do specialists at a DMD center coordinate care?
High-quality centers ensure that all key specialists share their notes and communicate with one another after your visit. You should also ask the clinic if they have a dedicated care coordinator who serves as your main point of contact.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Is this center a 'Certified Duchenne Care Center,' and how many children with DMD do you manage each year?
  2. 2.How do you coordinate care between the different specialists? Is there a single point of contact or care coordinator we should call?
  3. 3.What is your center's protocol for transition to adult care, and how early do you begin that planning?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (20)
  1. 1

    Rare DMD Gene Duplication in a Lebanese Child With Duchene Muscular Dystrophy.

    Assaf N, El Hajj J, Doghman J, et al.

    Clinical case reports 2026; (14(2)):e71967 doi:10.1002/ccr3.71967.

    PMID: 41626089
  2. 2

    Evaluating Implementation of the Updated Care Considerations for Duchenne Muscular Dystrophy.

    Ong KS, Kinnett K, Soelaeman R, et al.

    Pediatrics 2018; (142(Suppl 2)):S118-S128 doi:10.1542/peds.2018-0333N.

    PMID: 30275256
  3. 3

    Effect of multidisciplinary team collaborative nursing on wound healing and psychological symptoms in postoperative patients with gastrointestinal tumors.

    Huang XY, Qian D

    World journal of gastrointestinal oncology 2025; (17(10)):110471 doi:10.4251/wjgo.v17.i10.110471.

    PMID: 41114091
  4. 4

    Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy.

    Quinlivan R, Messer B, Murphy P, et al.

    Journal of neuromuscular diseases 2021; (8(6)):899-926 doi:10.3233/JND-200609.

    PMID: 34511509
  5. 5

    Duchenne muscular dystrophy.

    Duan D, Goemans N, Takeda S, et al.

    Nature reviews. Disease primers 2021; (7(1)):13 doi:10.1038/s41572-021-00248-3.

    PMID: 33602943
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    The Early Care (0-3 Years) In Duchenne Muscular Dystrophy Meeting Report.

    Armstrong N, Apkon S, Berggren KN, et al.

    Journal of neuromuscular diseases 2024; (11(2)):525-533 doi:10.3233/JND-230180.

    PMID: 38189762
  7. 7

    X-Linked Dilated Cardiomyopathy: A Cardiospecific Phenotype of Dystrophinopathy.

    Nakamura A

    Pharmaceuticals (Basel, Switzerland) 2015; (8(2)):303-20 doi:10.3390/ph8020303.

    PMID: 26066469
  8. 8

    Exercise Cardiac Magnetic Resonance Imaging in Boys With Duchenne Muscular Dystrophy Without Cardiac Disease.

    Power LC, Gusso S, Hornung TS, et al.

    Pediatric neurology 2021; (117()):35-43 doi:10.1016/j.pediatrneurol.2020.12.011.

    PMID: 33662889
  9. 9

    Case Report: Home initiation of nocturnal non-invasive ventilation in two adolescents with Duchenne muscular dystrophy and comorbid autism spectrum disorder and ADHD.

    Weerkamp PMM, Voermans M, Finders M, et al.

    Frontiers in pediatrics 2025; (13()):1525365 doi:10.3389/fped.2025.1525365.

    PMID: 40161498
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    Evolution of respiratory function in Duchenne muscular dystrophy from childhood to adulthood.

    LoMauro A, Romei M, Gandossini S, et al.

    The European respiratory journal 2018; (51(2)) doi:10.1183/13993003.01418-2017.

    PMID: 29437939
  11. 11

    Pragmatic Neurorehabilitation Approach for Improving Quality of Life in Duchenne Muscular Dystrophy: A Case Report.

    Nangliya R, Sasun AR, Samal S

    Cureus 2024; (16(3)):e56315 doi:10.7759/cureus.56315.

    PMID: 38629006
  12. 12

    Patient-led development of digital endpoints and the use of computer vision analysis in assessment of motor function in rare diseases.

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    Frontiers in pharmacology 2022; (13()):916714 doi:10.3389/fphar.2022.916714.

    PMID: 36172196
  13. 13

    Optimizing Bone Health in Duchenne Muscular Dystrophy.

    Buckner JL, Bowden SA, Mahan JD

    International journal of endocrinology 2015; (2015()):928385 doi:10.1155/2015/928385.

    PMID: 26124831
  14. 14

    Development of a guideline for orthopaedic management in the care of children and young people with Duchenne muscular dystrophy in the UK National Health Service.

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    Journal of children's orthopaedics 2025; (19(4)):267-275 doi:10.1177/18632521251348972.

    PMID: 40575436
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    Orthopedic management in Duchenne muscular dystrophy.

    Gaumé M, Cunin V, Vuillerot C

    Archives de pediatrie : organe officiel de la Societe francaise de pediatrie 2025; (32(7S1)):7S32-7S38 doi:10.1016/S0929-693X(25)00251-9.

    PMID: 41391909
  16. 16

    Longitudinal effect of eteplirsen versus historical control on ambulation in Duchenne muscular dystrophy.

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    Annals of neurology 2016; (79(2)):257-71 doi:10.1002/ana.24555.

    PMID: 26573217
  17. 17

    Duchenne Muscular Dystrophy in Kazakhstan: A Journey from Diagnosis to the Treatment, the Biases and Achievements.

    Jaxybayeva A, Chunkayeva D, Myrzaliyeva B, et al.

    Journal of neuromuscular diseases 2023; (10(2)):263-269 doi:10.3233/JND-221559.

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    Detecting early signs in Duchenne muscular dystrophy: comprehensive review and diagnostic implications.

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  19. 19

    Can simple and low-cost motor function assessments help in the diagnostic suspicion of Duchenne muscular dystrophy?

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  20. 20

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This page provides educational information about assembling a care team for Duchenne muscular dystrophy. Always consult with your child's primary neurologist and healthcare team to make medical decisions.

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