Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and LeukoencephalopathyNCT05567744
Registry for CADASIL
An observational study of Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy, run by University of Wisconsin, Madison at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 to 90 yearsHealthy volunteers can take part
- Conditions the study is for
- Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and Leukoencephalopathy
- What is being tested?
- Registry
- How many people
- 2,500 participants
- Where
- 1 siteUnited States
- Study dates
- 3 Jun 2022to Oct 2027
- How long will I take part?
- 20 Years
- Phase
- Observational
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 to 90 years
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
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.
Who may be able to join
- 18 years of age or older
- have a loved one or a family member with CADASIL, or are at-risk for CADASIL themselves
Who cannot join
- Under 18 years of age
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
University of Wisconsin
Madison, Wisconsin, 53705
CADASIL Consortium, 833-795-3016, info@cadasil-consortium.org
Jane Paulsen, PhD
About this study
Official title: 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.
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).
- Being tested
- Registry
- Keywords
- CADASIL
- Medical subject headings
- CADASIL
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
RegistryOther
Registry
| Study group | Role | What they receive |
|---|---|---|
| CADASIL Registry Participants | Have a loved one or family member with CADASIL, or anyone with or at risk for CADASIL Receives: Other: Registry |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: Up to 20 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Oct 2022
- Study start3 Jun 2022
- Primary completionOct 2027 (estimated)
- Study completionOct 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Cerebral Autosomal Dominant Ateriopathy With Subcortical Infarcts and LeukoencephalopathyStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 2,500 participants (estimated)
- Target duration
- 20 Years
Sponsor and investigators
- Lead sponsor
- University of Wisconsin, Madison
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Jane Paulsen, PhD, Principal investigator, University of Wisconsin, Madison
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05567744
- Sponsor's protocol ID
- 2022-0827
- Other IDs
- A535100, SMPH/NEUROLOGY/NEUROLOGY, Protocol Version 9/22/2022
- Status last verified
- Oct 2026
- First submitted
- 28 Sep 2022
- Last updated
- 23 Oct 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No