Start with molecular and treatment-history review before asking for a drug quote
The center first needs to confirm 5q SMA and understand prior therapy. Sending the SMN1 report, SMN2 copy number where available and complete treatment history can prevent unnecessary repeat testing and clarify which therapeutic questions are actually relevant.
- Neuromuscular specialist consultation
- Review of SMN1/SMN2 genetic results
- Motor-function and respiratory baseline review
- Review of prior nusinersen, risdiplam or gene therapy
- Additional testing only when needed for treatment eligibility or safety
Nusinersen involves both medicine and repeated procedure costs
Spinraza is delivered intrathecally and requires repeated administrations. A quotation may therefore include the medicine, lumbar-puncture procedure, day-case or hospital resources, laboratory monitoring and, in patients with complex spinal anatomy, image-guided access or additional procedural planning.
Risdiplam is an ongoing medication pathway rather than a one-time episode
Evrysdi is taken orally on an ongoing basis. International-patient access, dispensing, follow-up laboratory or clinical monitoring and continuity after returning home should be clarified before travel rather than treating one prescription as a complete care plan.
Gene therapy requires an eligibility review before any financial estimate
Onasemnogene-abeparvovec products have product-specific indications, routes and monitoring requirements. Zolgensma and the newer intrathecal Itvisma should not be treated as interchangeable commercial packages. The center must first confirm molecular eligibility, age/clinical criteria, prior treatment, route feasibility and safety-monitoring needs.
Respiratory, swallowing and orthopedic care can add separate episodes
Depending on disease severity, the budget may include respiratory-function testing, non-invasive ventilation or cough-assist review, swallowing assessment, nutrition, scoliosis/orthopedic review, seating and mobility evaluation and rehabilitation. These services are often clinically important even when disease-modifying therapy is already established.
Switching or sequencing therapy can require more specialist work than continuation
Patients considering a switch from nusinersen to risdiplam, a return to intrathecal therapy or a gene-therapy pathway may need additional records review and objective functional comparison. Evidence and eligibility can change over time, so the quote should reflect the actual clinical question rather than the name of a desired medicine.
Clinical-trial participation is not a treatment price
German SMA centers participate in registries and treatment studies. Trial-provided therapy, travel reimbursement and protocol tests vary by study and should be kept separate from routine self-pay medical treatment. A trial is not a commercial shortcut to an otherwise unavailable therapy.
Send records before requesting a written estimate
A staged quote is more useful when the center can determine whether the request is for diagnosis, continuation, switching, gene-therapy eligibility or multidisciplinary support.
- SMN1 genetic report and SMN2 copy number if known
- Neuromuscular reports
- Complete disease-modifying treatment history
- Motor-function scores
- Respiratory and ventilation records
- Swallowing/nutrition reports
- Spine imaging and surgical history if intrathecal treatment is relevant
- The specific treatment question for the German center
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.
- Spinraza – EPAR — European Medicines Agency ↗
- Evrysdi – EPAR — European Medicines Agency ↗
- Zolgensma – EPAR — European Medicines Agency ↗
- Itvisma – EPAR — European Medicines Agency ↗
- Neuromuscular outpatient referral information — Heidelberg University Hospital ↗
- Freiburg neuromuscular center — University Medical Center Freiburg ↗