Registry for CADASIL

Recruiting

• Conditions: Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy
• Interventions: Other: Registry

• Registration Number: NCT05567744
• Lead Sponsor: University of Wisconsin, Madison

Brief Summary

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.

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 Timeline

• Study Start: 2022-06-03
• Study First Submitted: 2022-09-28
• Study First Submitted QC: 2022-09-30
• Study First Posted: 2022-10-05
• Status Verified: 2024-11
• Last Update Submitted: 2024-11-10
• Last Update Posted: 2024-11-12
• Primary Completion: 2027-10
• Study Completion: 2027-10

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 2500

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 & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
CADASIL Registry Participants	Registry	Have a loved one or family member with CADASIL, or anyone with or at risk for CADASIL

Primary Outcome Measures

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

Trial Locations

Locations (1)

University of Wisconsin; 🇺🇸 Madison, Wisconsin, United States