Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

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ORPHA:136OMIM:125310I67.8
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6Active trials20Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) is the most common hereditary cause of stroke and vascular dementia in adults. It is caused by pathogenic variants in the NOTCH3 gene located on chromosome 19p13.1, which encodes a transmembrane receptor expressed predominantly in vascular smooth muscle cells. The disease primarily affects the small blood vessels of the brain, leading to progressive damage to the white matter and recurrent subcortical ischemic events. The hallmark clinical features of CADASIL include recurrent ischemic strokes or transient ischemic attacks (TIAs), typically beginning between the ages of 40 and 60, migraine with aura (often the earliest symptom, appearing in the 20s to 30s), progressive cognitive decline leading to vascular dementia, mood disturbances including depression and apathy, and white matter hyperintensities visible on brain MRI. The white matter changes on MRI are often detectable before clinical symptoms appear and characteristically involve the anterior temporal poles and external capsules. Granular osmiophilic material (GOM) deposits in the walls of small arteries are a pathological hallmark of the disease. There is currently no disease-modifying or curative treatment for CADASIL. Management is primarily supportive and focuses on controlling vascular risk factors such as hypertension, diabetes, and smoking. Antiplatelet therapy may be considered for secondary stroke prevention, although its benefit in CADASIL specifically has not been established in clinical trials. Thrombolysis and anticoagulation are generally avoided due to an increased risk of intracerebral hemorrhage. Migraine attacks are managed symptomatically, though triptans are typically avoided due to theoretical vascular risks. Rehabilitation, cognitive support, and psychological care are important components of long-term management. Genetic counseling is recommended for affected individuals and their families.

Also known as:

Clinical phenotype terms— hover any for plain English:

LeukoencephalopathyHP:0002352Lacunar strokeHP:0032325Multifocal hyperintensity of cerebral white matter on MRIHP:0040329Migraine with auraHP:0002077Transient ischemic attackHP:0002326Cerebral ischemiaHP:0002637
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

8 events
Nov 2025Neurogenetic And Hemodynamic Of Migraine Aura And Pfo

Azienda Usl di Bologna

TrialRECRUITING
Apr 2025Development and Validation of a Functional MRI Biomarker of Cerebral Small Vessel Dysfunction in CADASIL

Assistance Publique - Hôpitaux de Paris

TrialNOT YET RECRUITING
Nov 2023CERebrolysin In CADASIL

Ever Neuro Pharma GmbH — PHASE2

TrialACTIVE NOT RECRUITING
Nov 2023AusCADASIL: An Australian Cohort of CADASIL

Perminder Sachdev

TrialRECRUITING
Nov 2023Genotype, Clinical Features and Imaging of Neuroradiological Abnormalities in CADASIL

Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta

TrialRECRUITING
May 2023RAre, But Not aLone: a Large Italian Network to Empower the Impervious diaGNostic Pathway of Rare cerEbrovascular Diseases (ALIGNED)

Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta — NA

TrialRECRUITING
Apr 2022Natural History Study of CADASIL

National Heart, Lung, and Blood Institute (NHLBI)

TrialRECRUITING
Apr 2021MRI Study of Blood-brain Barrier Function in CADASIL

Peking University First Hospital — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy.

6 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

6 recruitingView all trials with filters →
Phase 21 trial
CERebrolysin In CADASIL
Phase 2
Active
PI: Aleš Tomek, MUDr., Ph.D. (Motol University Hospital) · Sites: Prague · Age: 1899 yrs
N/A2 trials
RAre, But Not aLone: a Large Italian Network to Empower the Impervious diaGNostic Pathway of Rare cerEbrovascular Diseases (ALIGNED)
N/A
Actively Recruiting
PI: Anna Bersano, MD · Sites: Acquaviva delle Fonti, BA; Melegnano, MI +15 more · Age: 1899 yrs
MRI Study of Blood-brain Barrier Function in CADASIL
N/A
Actively Recruiting
PI: Chen Ling, PhD · Sites: Beijing · Age: 2070 yrs
Other3 trials
Natural History Study of CADASIL
Actively Recruiting
PI: Elisa A Ferrante Brenlla, Ph.D. (National Heart, Lung, and Blood Institute (NHLBI)) · Sites: Bethesda, Maryland · Age: 18100 yrs
AusCADASIL: An Australian Cohort of CADASIL
Actively Recruiting
PI: Perminder S Sachdev, MBBS, MD, PhD, FRANZCP, FAAHMS (University of New South Wales) · Sites: Newcastle, New South Wales; Sydney, New South Wales +3 more · Age: 1899 yrs
Genotype, Clinical Features and Imaging of Neuroradiological Abnormalities in CADASIL
Actively Recruiting
· Sites: Milan; Madrid · Age: 1899 yrs

Specialists

20 foundView all specialists →
CP
Chen Ling, PhD
Beijing
Specialist

Rare Disease Specialist

JP
Jane S Paulsen, PhD
MADISON, WI
Specialist
PI on 2 active trials
PC
Pr Hugues Chabriat
Specialist
PI on 1 active trial
DH
David Ho
Specialist
PI on 2 active trials26 Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy publications
MM
Michael D Geschwind, MD
SAN FRANCISCO, CA
Specialist
PI on 1 active trial
JP
Jane Paulsen, PhD
MADISON, WI
Specialist
PI on 1 active trial
SM
Swati A Sathe, MD, MS
PATERSON, NJ
Specialist
PI on 1 active trial2 Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy publications
JM
JOIN-LAMBERT Claire, MD
Specialist
PI on 1 active trial
HP
Hugues Chabriat, MD PhD
Specialist
PI on 1 active trial
AM
Anna Bersano, MD
Milan
Specialist

Rare Disease Specialist

1 Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy publication
MM
Michelle P Lin, MD, MPH
Specialist
PI on 1 active trial
EB
Elisa A Ferrante Brenlla
Specialist
PI on 1 active trial
EK
Eman M Khedr
Specialist
PI on 1 active trial
FO
Francesco Orzi
Specialist
PI on 1 active trial
NH
Nancy A Hodgson
ANGIER, NC
Specialist
PI on 1 active trial
BH
Bettina S Husebø
Specialist
PI on 1 active trial
AF
Agnes Flöel
Specialist
PI on 2 active trials
JM
James F Meschia
JACKSONVILLE, FL
Specialist
PI on 1 active trial
AJ
Anne JOUTEL
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

Peking University First Hospital

📍 Beijing, Beijing Municipality

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

Travel Grants

No travel grants are currently matched to Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

Disease timeline:

New recruiting trial: Neurogenetic And Hemodynamic Of Migraine Aura And Pfo

A new clinical trial is recruiting patients for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

New recruiting trial: Natural History Study of CADASIL

A new clinical trial is recruiting patients for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

New recruiting trial: Genotype, Clinical Features and Imaging of Neuroradiological Abnormalities in CADASIL

A new clinical trial is recruiting patients for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

New recruiting trial: AusCADASIL: An Australian Cohort of CADASIL

A new clinical trial is recruiting patients for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

New recruiting trial: MRI Study of Blood-brain Barrier Function in CADASIL

A new clinical trial is recruiting patients for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

New trial: MRI Study of Blood-brain Barrier Function in CADASIL

Phase NA trial recruiting. MRI

New trial: RAre, But Not aLone: a Large Italian Network to Empower the Impervious diaGNostic Pathway of Rare ce

Phase NA trial recruiting.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy

What is Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy?

Cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL) is the most common hereditary cause of stroke and vascular dementia in adults. It is caused by pathogenic variants in the NOTCH3 gene located on chromosome 19p13.1, which encodes a transmembrane receptor expressed predominantly in vascular smooth muscle cells. The disease primarily affects the small blood vessels of the brain, leading to progressive damage to the white matter and recurrent subcortical ischemic events. The hallmark clinical features of CADASIL include recurrent ischemic strokes

How is Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy inherited?

Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy typically begin?

Typical onset of Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy?

Yes — 6 recruiting clinical trials are currently listed for Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy?

20 specialists and care centers treating Cerebral autosomal dominant arteriopathy-subcortical infarcts-leukoencephalopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.