Expert review can be cheaper than repeating the whole diagnostic work-up
If the patient already has good MRI source images, a complete genetic laboratory report and a clear clinical timeline, a specialist may be able to focus the visit on variant interpretation and management. Sending only a diagnosis in a discharge letter often leads to avoidable repeat imaging or laboratory work because the receiving center cannot verify the original evidence.
MRI cost depends on what imaging is missing
CADASIL assessment generally requires high-quality brain MRI rather than a generic head scan. FLAIR helps define white-matter disease and lacunes, while susceptibility-sensitive sequences such as SWI or T2* help assess microbleeds. Additional vascular imaging may be requested if the history suggests another stroke mechanism. The quote should therefore distinguish review of existing DICOM data from new MRI performed in Germany.
NOTCH3 testing can range from targeted analysis to broader sequencing
When the phenotype strongly suggests CADASIL, NOTCH3 sequencing may be sufficient. If the presentation is atypical or the previous result is uncertain, the specialist may recommend confirmation in another laboratory or a multigene cerebral-small-vessel-disease panel that includes disorders such as HTRA1-, COL4A1/COL4A2- and Fabry-related disease. Broader testing costs more but can prevent a false CADASIL label.
Genetic counseling is a separate clinical service
A positive hereditary diagnosis affects relatives and family planning. Diagnostic counseling for the patient, interpretation of inheritance and predictive testing of healthy adult family members should not be treated as a single laboratory charge. Ask whether the hospital quote includes clinical genetics or whether family members require separate appointments and tests.
Neuropsychology may be useful when cognition is part of the referral question
Executive dysfunction and slowing can occur in CADASIL. If the goal is to document impairment, compare progression or plan rehabilitation, formal neuropsychological testing can add time and cost beyond a standard neurological consultation. It is usually unnecessary when the only question is interpretation of a clearly reported NOTCH3 variant.
Young-stroke differential diagnosis can substantially expand the bill
A specialist may not accept CADASIL as the only explanation for every stroke. Depending on age, event pattern and previous work-up, additional cardiac, vascular, laboratory or inflammatory testing can be required to exclude competing stroke mechanisms. A quote for 'CADASIL evaluation' is therefore meaningful only after the center knows which tests have already been completed.
Long-term cost is follow-up and complication management, not one definitive procedure
Because there is no proven disease-modifying therapy, future expenditure can include neurology follow-up, repeat imaging when clinically indicated, migraine treatment, vascular-risk management, rehabilitation after stroke, neuropsychology and treatment of psychiatric or cognitive symptoms. These ongoing needs should be separated from the initial diagnostic trip to Germany.
International offices calculate the estimate after medical review
Heidelberg's Medical International Office states that medical documents are reviewed by the relevant specialist before a treatment offer and preliminary cost estimate are produced. UKE describes a similar sequence: the International Office receives the inquiry, obtains medical records, forwards them to the responsible department for a treatment plan and then prepares a cost estimate, followed by prepayment and appointment scheduling when the patient proceeds.
Send these records before requesting a cost estimate
The clearer the unresolved diagnostic question, the more realistic the estimate can be.
- Brain MRI DICOM files and reports
- Complete NOTCH3 report with exact variant and classification
- Any previous inherited-stroke or small-vessel-disease gene panel
- Family history or pedigree
- Chronological stroke/TIA/migraine history
- Previous cardiac and vascular stroke work-up
- Current medication list
- Recent neurology report in German or English where possible
- Neuropsychological reports if cognition is part of the question
- Requested service: diagnostic confirmation, variant reinterpretation, broader genetic work-up, family counseling, stroke-prevention review or follow-up
Official sources
Last source-reviewed 2026-09-02. Cost procedures and published service fees can change, so confirm current terms directly with the provider before transferring money or booking travel.
- UKE international patient workflow — University Medical Center Hamburg-Eppendorf (UKE) ↗
- UKE International Office — University Medical Center Hamburg-Eppendorf (UKE) ↗
- Finance and individualized treatment cost estimates — Heidelberg University Hospital ↗
- International treatment inquiry and required documents — Heidelberg University Hospital ↗
- CADASIL – diagnosis and management — GeneReviews / NCBI Bookshelf ↗