Genetic confirmation can change the scope of the visit
If a complete DMD-gene report is already available, the German center may be able to review it without repeating testing. In incomplete cases, deletion/duplication testing, sequencing and human-genetics consultation can add separate laboratory and specialist costs.
Medication review is different from a one-time procedure quote
Corticosteroid treatment, vamorolone and selected givinostat are ongoing therapies. The relevant budget can include specialist review, medicine supply, monitoring and repeated follow-up rather than a single hospital episode. Ask the center to separate drug costs from professional and laboratory charges.
Givinostat requires recurring laboratory monitoring
EMA requires platelet and triglyceride monitoring for Duvyzat and dose adjustment may be needed for laboratory abnormalities or significant diarrhoea. A realistic estimate should therefore include baseline and follow-up laboratory testing as well as the medication itself.
Cardiac surveillance can include several separate tests
DMD cardiac follow-up may include ECG, echocardiography, Holter monitoring, blood tests and cardiac MRI depending on age and previous findings. These are usually separate diagnostic services rather than automatically included in a neuromuscular consultation.
Respiratory and sleep assessment can add recurring costs
Pulmonary-function testing, sleep studies, cough-assist review and non-invasive ventilation assessment may be needed as respiratory weakness progresses. Equipment purchase, rental or titration should be clarified separately from consultation fees.
Physiotherapy, orthotics, scoliosis and bone-health care are separate pathways
A multidisciplinary DMD plan can involve physiotherapy, occupational therapy, orthotics, wheelchair/seating assessment, orthopedic review, spine imaging, bone-density or endocrine evaluation and fracture management. Ask which disciplines are included in the proposed visit.
Clinical-trial screening is not an approved-treatment price
Mutation-specific and experimental studies may have their own sponsor-funded or study-specific arrangements, but eligibility review and standard-care testing can still create costs. Do not compare the price of an authorised medicine with an experimental study as if they were equivalent commercial treatments.
Send complete records before asking for an estimate
A scoped quote is more accurate when the center knows the molecular diagnosis, current function and which surveillance is already up to date.
- Full DMD-gene report
- Current age, height, weight and ambulatory status
- Neuromuscular reports and serial functional scores
- Corticosteroid/vamorolone/givinostat history
- Recent platelet and triglyceride results if using or considering givinostat
- ECG, Holter, echocardiography and cardiac MRI reports
- Pulmonary-function and sleep-study results
- Physiotherapy, orthotic, scoliosis and bone-health records
- Exact request: diagnostic second opinion, medication review, multidisciplinary assessment, transition planning or trial inquiry
Official sources
Last source-reviewed 2026-09-01. Cost procedures and published service fees can change, so confirm current terms directly with the provider before transferring money or booking travel.