Registry for CADASIL

Research Registry for Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy (CADASIL)

This study is being done in order to create a registry (list) of people interested in Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) research. It may be that you have a family member or other loved one with CADASIL, or that you may have CADASIL or are at risk. Participation means that your name will be added to a list of people who will be invited to participate in future research studies on CADASIL. Participants must be 18 years or older, and will remain on the registry until they request to be removed.

Study Overview

• Status: Recruiting
• Conditions: Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy
• Intervention / Treatment: Other: Registry

Detailed Description

The purpose of this registry is to allow Dr. Jane Paulsen and her CADASIL research teams to contact individuals on the list who may fit a study's eligibility requirements. All individuals interested in CADASIL research who either have a family member or loved one, or are at risk themselves, are eligible to participate in this registry. Information collected as part of the registry will be used solely to determine potential participant's eligibility to participate research.

A patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).

• Study Type: Observational
• Enrollment (Estimated): 2500

Contacts and Locations

• Study Contact: Name: CADASIL Consortium; Phone Number: 833-795-3016; Email: info@cadasil-consortium.org

Study Locations

• United States
  • Wisconsin
    • Madison, Wisconsin, United States, 53705
      • Recruiting
      • University of Wisconsin
      • Contact: CADASIL Consortium; Phone Number: 833-795-3016; Email: info@cadasil-consortium.org
      • Principal Investigator: Jane Paulsen, PhD

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 90 years (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

• Sampling Method: Non-Probability Sample

Study Population

Study team will inform the lay community and professional society's memberships of the registry to assist with referrals for enrollment. Participants who are being contacted for other CADASIL research projects will be asked whether they would also like to enroll in the registry. Clinicians or other members of a patient's care team may also recruit participants out of their clinics.

Description

Inclusion Criteria:

• 18 years of age or older
• have a loved one or a family member with CADASIL, or are at-risk for CADASIL themselves

Exclusion Criteria:

• Under 18 years of age

Study Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Other

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
CADASIL Registry Participants; Have a loved one or family member with CADASIL, or anyone with or at risk for CADASIL	Other: Registry; Registry

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
A Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) Registry	Create a list of persons willing to volunteer for CADASIL-related research to facilitate efficient recruitment.	Up to 20 years

Collaborators and Investigators

• Sponsor: University of Wisconsin, Madison
• Investigators: Principal Investigator: Jane Paulsen, PhD, University of Wisconsin, Madison

Study record dates

Study Major Dates

• Study Start (Actual): June 3, 2022
• Primary Completion (Estimated): October 1, 2027
• Study Completion (Estimated): October 1, 2027

Study Registration Dates

• First Submitted: September 28, 2022
• First Submitted That Met QC Criteria: September 30, 2022
• First Posted (Actual): October 5, 2022

Study Record Updates

• Last Update Posted (Estimated): October 16, 2025
• Last Update Submitted That Met QC Criteria: October 15, 2025
• Last Verified: October 1, 2025

More Information

Terms related to this study

• Keywords: CADASIL
• Additional Relevant MeSH Terms: Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Vascular Diseases; Cardiovascular Diseases; Pathologic Processes; Genetic Diseases, Inborn; Brain Infarction; Brain Ischemia; Infarction; Necrosis; Dementia; Ischemia; Intracranial Arterial Diseases; Stroke; Cerebral Arterial Diseases; Cerebral Infarction; Cerebral Small Vessel Diseases; Dementia, Vascular; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Pathological Conditions, Signs and Symptoms; CADASIL; Organization and Administration; Health Services Administration; Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Records; Registries
• Other Study ID Numbers: 2022-0827; A535100 (Other Identifier: UW Madison); SMPH/NEUROLOGY/NEUROLOGY (Other Identifier: UW Madison); Protocol Version 9/22/2022 (Other Identifier: UW Madison)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No