ClinicalTrials.gg
RecruitingNCT05567744Updated Oct 23, 2026

Registry for CADASIL

An observational study in Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy, sponsored by University of Wisconsin, Madison. Recruiting at 1 site in United States. Open to participants aged 18 Years to 90 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-10-23.

Sponsored by University of Wisconsin, Madison · Observational

From the registry’s dates

  • Started Jun 2022; still recruiting 4 years 5 months later.
Study type
Observational
Model
Cohort
Time perspective
Other
Enrollment
2,500
Ages
18 Years to 90 Years
Sex
All
01

Study 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.

Read the 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).

02

Conditions studied

  • Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy

Browse trials for

Keywords

  • CADASIL
03

In context

CADASIL

33 studies on the registry are indexed under CADASIL; 18 are open to participants now.

This study's planned enrollment of 2,500 is above the median of 168 across 22 observational studies indexed under CADASIL.

Browse CADASIL studies →

Lead sponsor

University of Wisconsin, Madison is the lead sponsor of 1,188 studies on the registry; 181 are open to participants now.

Of its 157 completed or terminated interventional studies of FDA-regulated products, 118 (75%) have results posted.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
18 Years to 90 Years
Sexes eligible
All
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.

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

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

Exclusion Criteria:

  • Under 18 years of age
05

Study design

Observational model
Cohort
Time perspective
Other
Enrollment
2,500 participants (estimated)
Target follow-up
20 Years
Patient registry
Yes

Groups and cohorts

  • CADASIL Registry Participants

    Have a loved one or family member with CADASIL, or anyone with or at risk for CADASIL

    Other: Registry

Interventions

  • OtherRegistry

    Registry

06

What researchers measure

Primary outcomes

  1. 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.

    Time frame: Up to 20 years

07

Study locations

1 of 1 sites recruiting
08

References and documents

Individual participant data

Plan to share: No

No publications or documents are linked to this record.

09

Timeline

1 registry update since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Started Jun 2022 (actual). Primary completion is estimated for Oct 2027, 64 months after the start.

How these figures are worked out, and which studies are left out of them.

Registered
Sep 28, 2022
First posted
Oct 5, 2022
StartActual
Jun 3, 2022
Primary completionEst.
Oct 2027
CompletionEst.
Oct 2027
Last update
Oct 23, 2026
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
Minor edits
Nothing that changes what the study is or who can join. Edited: verification date
1 update, last Oct 23, 2026
Show all 1 update
  1. Oct 23, 2026
    Minor edits only
    + 1 other change: verification date

From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗

10

Registry details

Key details

Study ID
NCT05567744
Responsible party
Sponsor
First posted
Oct 5, 2022
Start date
Jun 3, 2022
Primary completion
Oct 2027 (estimated)
Completion
Oct 2027 (estimated)
Last update
Oct 23, 2026

Study contacts

CADASIL Consortium
Contact
info@cadasil-consortium.org
833-795-3016
Jane Paulsen, PhD
principal investigator · University of Wisconsin, Madison

Oversight

FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Interested in this study?

Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.

Contact study team

Follow this study

Get an email when the registry record changes — status, dates, results — or when someone posts here.

Sign in to follow

Discussion

Questions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.

Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.

Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.

Start the discussion