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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Vascular Neurology

Building Your Neurology Care Team

At a Glance

Managing CADASIL requires a multi-disciplinary care team led by a vascular neurologist. Because the disease is rare, patients must actively coordinate their care involving neurogeneticists, neuropsychologists, and psychiatrists to properly monitor brain health, cognitive changes, and mood.

Because CADASIL is a rare condition, finding a doctor who has seen it before can be a challenge. You are not just a patient; you are the coordinator of a specialized “brain protection” team [1]. Having the right experts in place ensures that your symptoms are managed correctly and that you are using every available tool to slow the disease’s progression [2][3].

Your Core Care Team

A multi-disciplinary approach is the gold standard for CADASIL care, as the disease can affect your movement, your thinking, and your mood [4][5].

  • Vascular Neurologist: This is the “captain” of your team. They specialize in the blood vessels of the brain. They will manage your stroke risk, blood pressure, and MRI monitoring [4][2].
  • Neurogeneticist or Genetic Counselor: These experts help you understand your specific NOTCH3 mutation and are essential if you are discussing the diagnosis with family members [1][6].
  • Neuropsychologist: Unlike a general psychologist, these specialists perform detailed testing of your executive function (planning, organizing, and processing speed) to track how the disease is affecting your daily cognitive abilities [7][5].
  • Psychiatrist: Because CADASIL can directly cause mood disturbances like depression, apathy, or bipolar-like symptoms, a psychiatrist can help manage these through specialized medication or therapy [5][8].
  • Physical and Occupational Therapists (PT/OT): If the disease affects your balance or your ability to perform daily tasks, PT and OT can provide exercises to keep you independent and safe [9].

Vetting Your Neurologist

Many general neurologists may only see one case of CADASIL in their entire career. It is okay—and encouraged—to “interview” your doctor to ensure they have the right expertise. Consider asking:

  1. “How familiar are you with the specific MRI hallmarks of CADASIL, like anterior temporal lobe involvement?” [10]
  2. “What is your protocol for monitoring cerebral microbleeds over time?” [11]
  3. “Are you aware of which medications, like triptans, should be avoided in CADASIL patients?” [12]

Preparing for Your Consultation

Specialists are often in high demand, so being organized will help you get the most out of your visit. You should compile a physical “Diagnostic File” to bring with you that includes:

  • Genetic Test Results: The full report showing the NOTCH3 variant and exon number [6].
  • MRI Images on a Disc: Do not just bring the written report; the doctor will want to see the actual “slices” of your brain, especially high-resolution sequences like SWI or T2* which show microbleeds [11][13].
  • Blood Pressure Logs: Bring at least two weeks of home blood pressure readings [14].
  • Family History: A list of any relatives who had early-onset strokes, dementia, or “mystery” neurological issues [1].

Monitoring for the Long Term

Expert care is not a one-time event. Your team will use clinical assessments and neuroimaging to track the disease [15]. While there is no single rule for how often to scan the brain, regular check-ins allow your team to adjust your medications (like antiplatelets or blood pressure pills) based on the latest changes in your white matter hyperintensities or lacunar infarcts [16][13].

Common questions in this guide

What doctors treat CADASIL?
The core CADASIL care team should be led by a vascular neurologist. You will also likely need a neurogeneticist to explain your NOTCH3 mutation, a neuropsychologist to track cognitive changes, and a psychiatrist to manage mood disturbances.
How do I prepare for my first CADASIL neurologist appointment?
Bring a diagnostic file that includes your full NOTCH3 genetic test report and two weeks of home blood pressure logs. You should also bring the actual discs of your MRI images, especially high-resolution sequences, rather than just the written reports.
What questions should I ask a new neurologist about CADASIL?
Ask how many CADASIL patients they manage and if they are comfortable interpreting NOTCH3 genetic reports. It is also important to ask about their protocol for monitoring cerebral microbleeds and evaluating small vessel MRI patterns.
Why do I need a neuropsychologist for CADASIL?
CADASIL frequently affects executive functions like planning, organizing, and processing speed. A neuropsychologist performs detailed cognitive testing to track these specific changes over time and help you adapt to them.
Can CADASIL cause mental health problems?
Yes, the disease can directly cause mood disturbances such as depression, apathy, or bipolar-like symptoms. A psychiatrist can help manage these symptoms safely with specialized medication or therapy.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with CADASIL or other hereditary small vessel diseases do you currently manage?
  2. 2.Are you comfortable interpreting NOTCH3 genetic reports and their specific 'cysteine' variants?
  3. 3.How do you prefer to monitor for disease progression—clinical symptoms, MRI findings, or cognitive testing?
  4. 4.Do you have a preferred neuro-radiologist who specializes in identifying small vessel patterns like anterior temporal pole involvement?
  5. 5.What is your approach to balancing the risk of ischemic stroke versus brain bleeds in my specific case?

Questions For You

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References

References (16)
  1. 1

    Hereditary Haemorrhagic Cerebrovascular Disease: Implications for Clinical Management.

    Hou W, Hou Y, Ren X, Liu J

    Annals of neurosciences 2025; 09727531241308346 doi:10.1177/09727531241308346.

    PMID: 40115281
  2. 2

    Management of Inherited CNS Small Vessel Diseases: The CADASIL Example: A Scientific Statement From the American Heart Association.

    Meschia JF, Worrall BB, Elahi FM, et al.

    Stroke 2023; (54(10)):e452-e464 doi:10.1161/STR.0000000000000444.

    PMID: 37602377
  3. 3

    Lifelong cerebrovascular disease burden among CADASIL patients: analysis from a global health research network.

    Pan AP, Potter T, Bako A, et al.

    Frontiers in neurology 2023; (14()):1203985 doi:10.3389/fneur.2023.1203985.

    PMID: 37521283
  4. 4

    Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy (CADASIL) in a 32-Year-Old Male Presenting With a Transient Ischemic Attack (TIA).

    Karim R, Malik M, Cheema H, et al.

    Cureus 2024; (16(10)):e70970 doi:10.7759/cureus.70970.

    PMID: 39507177
  5. 5

    CADASIL presenting as late-onset mania with anosognosia.

    Uppal M, Kanellopoulos D, Kotbi N

    Clinical case reports 2020; (8(1)):47-50 doi:10.1002/ccr3.2594.

    PMID: 31998484
  6. 6

    Role of NOTCH3 Mutations in the Cerebral Small Vessel Disease Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy.

    Coupland K, Lendahl U, Karlström H

    Stroke 2018; (49(11)):2793-2800 doi:10.1161/STROKEAHA.118.021560.

    PMID: 30355220
  7. 7

    The INECO Frontal Screening for the Evaluation of Executive Dysfunction in Cerebral Small Vessel Disease: Evidence from Quantitative MRI in a CADASIL Cohort from Colombia.

    Schoemaker D, Zuluaga Y, Viswanathan A, et al.

    Journal of the International Neuropsychological Society : JINS 2020; (26(10)):1006-1018 doi:10.1017/S1355617720000533.

    PMID: 32487276
  8. 8

    CADASIL Syndrome Presenting as Obsessive-Compulsive Disorder: A Case Report.

    Canlı D, Keskin M

    Noro psikiyatri arsivi 2025; (62(1)):90-93 doi:10.29399/npa.28683.

    PMID: 40046195
  9. 9

    Ataxia Associated with CADASIL: a Pathology-Confirmed Case Report and Literature Review.

    Park DG, Min JH, Sohn SH, et al.

    Cerebellum (London, England) 2020; (19(6)):907-910 doi:10.1007/s12311-020-01173-z.

    PMID: 32734377
  10. 10

    [The hereditary vessel disease CADASIL].

    Sveinsson OA, Arkink EB, Thors B

    Laeknabladid 2024; (110(7)):360-364 doi:10.17992/lbl.2024.0708.801.

    PMID: 38934718
  11. 11

    Cerebral Microbleed Burdens in Specific Brain Regions Are Associated With Disease Severity of Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy.

    Chung CP, Chen JW, Chang FC, et al.

    Journal of the American Heart Association 2020; (9(13)):e016233 doi:10.1161/JAHA.120.016233.

    PMID: 32552418
  12. 12

    Cardiovascular Events, Conditions, and Procedures Among People With Episodic Migraine in the US Population: Results from the American Migraine Prevalence and Prevention (AMPP) Study.

    Buse DC, Reed ML, Fanning KM, et al.

    Headache 2017; (57(1)):31-44 doi:10.1111/head.12962.

    PMID: 27861837
  13. 13

    R558C NOTCH3 Mutation in a CADASIL Patient with Intracerebral Hemorrhage: A Case Report with Literature Review.

    Hu L, Liu G, Fan Y

    Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association 2022; (31(7)):106541 doi:10.1016/j.jstrokecerebrovasdis.2022.106541.

    PMID: 35523050
  14. 14

    Intracerebral hemorrhage in CADASIL.

    Hsu SL, Liao YC, Chung CP, et al.

    Journal of the Chinese Medical Association : JCMA 2025; (88(3)):189-195 doi:10.1097/JCMA.0000000000001206.

    PMID: 39806999
  15. 15

    Predictors of Clinical Worsening in Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy: Prospective Cohort Study.

    Chabriat H, Hervé D, Duering M, et al.

    Stroke 2016; (47(1)):4-11 doi:10.1161/STROKEAHA.115.010696.

    PMID: 26578659
  16. 16

    Imaging Characteristics for Predicting Cognitive Impairment in Patients With Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy.

    Taniguchi A, Shindo A, Tabei KI, et al.

    Frontiers in aging neuroscience 2022; (14()):876437 doi:10.3389/fnagi.2022.876437.

    PMID: 35754959

This page is for informational purposes only and does not replace professional medical advice. Always consult your vascular neurologist or healthcare provider about managing CADASIL.

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