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Registry for CADASIL

Sponsor
University of Wisconsin, Madison (Other)
Overall Status
Recruiting
CT.gov ID
NCT05567744
Collaborator
(none)
2,500
Enrollment
1
Location
63.9
Anticipated Duration (Months)
39.1
Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease Intervention/Treatment Phase
  • 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 Design

Study Type:
Observational [Patient Registry]
Anticipated Enrollment :
2500 participants
Observational Model:
Cohort
Time Perspective:
Other
Official Title:
Research Registry for Cerebral Autosomal Dominant Arteriopathy With Subcortical Infarcts and Leukoencephalopathy (CADASIL)
Actual Study Start Date :
Jun 3, 2022
Anticipated Primary Completion Date :
Oct 1, 2027
Anticipated Study Completion Date :
Oct 1, 2027

Arms and Interventions

Arm 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

Outcome Measures

Primary Outcome Measures

  1. 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.

Eligibility Criteria

Criteria

Ages Eligible for Study:
18 Years to 90 Years
Sexes Eligible for Study:
All
Accepts Healthy Volunteers:
Yes
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

Contacts and Locations

Locations

Site City State Country Postal Code
1 University of Wisconsin Madison Wisconsin United States 53705

Sponsors and Collaborators

  • University of Wisconsin, Madison

Investigators

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

Study Documents (Full-Text)

None provided.

More Information

Publications

None provided.
Responsible Party:
University of Wisconsin, Madison
ClinicalTrials.gov Identifier:
NCT05567744
Other Study ID Numbers:
  • 2022-0827
  • A535100
  • SMPH/NEUROLOGY/NEUROLOGY
  • Protocol Version 9/22/2022
First Posted:
Oct 5, 2022
Last Update Posted:
Dec 7, 2022
Last Verified:
Dec 1, 2022
Individual Participant Data (IPD) Sharing Statement:
No
Plan to Share IPD:
No
Studies a U.S. FDA-regulated Drug Product:
No
Studies a U.S. FDA-regulated Device Product:
No
Keywords provided by University of Wisconsin, Madison
CADASIL
Additional relevant MeSH terms:
Leukoencephalopathies
CADASIL
Dementia, Multi-Infarct
Infarction

Study Results

No Results Posted as of Dec 7, 2022