Telemedicine and Remote Care in Duchenne Muscular Dystrophy

Telemedicine in Duchenne muscular dystrophy is the delivery of clinical care through video, telephone, and other remote channels. For families managing a progressive disease with multiple specialists, frequent appointments, and significant travel logistics, the option of seeing a clinician without leaving the house is a meaningful change in how care can be organised. It does not replace every in-person visit, but it complements them in specific, useful ways.

This post is a practical guide. The actual decision about which visits work virtually belongs to the patient, family, and care team.

Why telemedicine matters in DMD

Three structural realities of DMD make remote care more valuable than it is in many other conditions. Patients often see four to six specialists routinely. Each visit may involve hours of travel and substantial physical exertion. Equipment (wheelchairs, ventilators, suction, medications) has to come along. Even before a visit begins, the cost in family time and patient energy is high.

Replacing some in-person visits with well-organised remote ones reduces that cost without losing the clinical content that does not require hands-on examination. A 2025 viewpoint in a peer-reviewed journal summarised the current state of telemedicine in DMD and described concrete benefits across provider-to-provider, provider-to-family, and patient-to-family communication. (Exploring the Role of Telemedicine in DMD, JMIR Formative Research)

For background, see the DMD care team explained.

What telemedicine handles well

Some clinical encounters move to video with little or no loss of fidelity:

• Medication review and adjustments, including discussion of corticosteroid dosing, side effects, and stress-dose plans.
• Counselling and education, including disease overview for newly diagnosed families, anticipatory guidance, and family questions.
• Mental health and social work follow-up, where listening, talking, and screening tools do most of the work.
• Care coordination and care plan review, especially across multiple specialists who otherwise rarely connect.
• Results review after tests are done elsewhere (echo, pulmonary function, sleep study, MRI).
• Targeted observational assessments, including some functional measures by video.

Recent research has documented that remote functional evaluation, including the North Star Ambulatory Assessment by live video, correlates strongly with in-person assessment, supporting its use to complement clinic visits. (Validity of remote NSAA video evaluation in DMD, PMC)

For background on the standard assessments, see functional assessments in DMD.

What telemedicine does not replace

Several elements still need an in-person visit:

• Hands-on physical examination when subtle muscle, joint, or skin changes need direct evaluation.
• Imaging and infusion that require equipment on site.
• Equipment fittings including wheelchair adjustments and orthotic refits.
• Procedures including blood draws, vaccinations, and any intervention that needs sterile technique or specific equipment.
• Some respiratory and cardiac assessments requiring specialised testing.
• First visits with new specialists, where in-person rapport and a complete examination set the baseline.

A reasonable rule: if the visit needs the clinician’s hands or a piece of equipment, it stays in person. If it needs the clinician’s attention and judgment, it often moves to video.

How families can prepare for a video visit

A few small steps make virtual visits substantially more useful:

• Set up beforehand. Confirm the platform, test the link, and have a backup plan (phone call) if the video fails.
• Quiet, well-lit room with the patient visible from the chair or bed, not just the face.
• Have the medication list, current weight (if measurable), recent home measurements (oximeter, blood pressure if relevant), and a written list of questions ready before the visit starts.
• Carry the questions list to the screen rather than trying to remember them.
• Have the patient try to sit, stand, or perform whatever movement the team may want to observe when this is part of the plan.
• Document the visit afterward. Write down the recommendations while they are fresh.

Patient organisations have published practical telehealth checklists for DMD families that cover similar ground. (PPMD, Telehealth Visits: Dos and Don'ts)

When telemedicine extends access

For families in regions without local neuromuscular expertise, telemedicine can be the difference between regular subspecialist follow-up and almost none. Several US and international centres now run hybrid clinics that combine in-person assessments with remote follow-up between visits, sometimes coordinated with a local primary care provider who handles the on-the-ground tasks.

For some families, the savings extend across many domains: travel costs, hotel nights, lost work hours, and the cumulative wear of long days that exhaust both patient and caregiver.

For background, see the first year after a DMD diagnosis.

Limits worth naming

A few honest constraints:

• Insurance coverage varies by country, region, and visit type. Some payers still treat telemedicine differently from in-person care.
• Cross-state and cross-border licensing rules in some jurisdictions limit which clinicians can see which patients remotely.
• Older patients may use telemedicine for primary subspecialty follow-up, but coordination with new clinicians at transition to adult care often still requires an initial in-person visit.
• Connectivity in some homes and regions is unreliable.

These are real limits, not reasons to avoid telemedicine. They are factors to plan around.

For background on adult care transitions, see DMD transition to adulthood and adult care in DMD.

How to ask for it

If telemedicine has not been offered, asking is reasonable. A short note to the care team saying that travel to clinic is difficult and asking which visits could be done virtually is usually enough to open the conversation.

Specific questions families can raise:

• Which routine follow-ups would the team consider virtual?
• Is there a hybrid model that combines in-person physical exam with remote follow-up?
• Are there patient organisation programs that support telemedicine equipment or connectivity?
• Who handles the visit if the connection drops?

What is still uncertain

Best practices for remote DMD care continue to evolve, particularly for non-ambulatory patients, for cross-border care, and for integrating remote monitoring devices (pulse oximeters, peak cough flow meters, wearable activity trackers) into routine surveillance.

The reasonable framing is that telemedicine in DMD is an established complement to in-person care, not a replacement for all of it. The decisions about when to use it belong to the patient, family, and care team.

For related reading, see the DMD care team explained, the first year after a DMD diagnosis, crossing borders for Duchenne treatment, and DMD standards of care.

Disclaimer: This post is informational and does not constitute medical advice. Decisions about diagnosis or treatment must be made with a qualified care team.