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| ID | Type | Description | Link |
|---|---|---|---|
| A535100 | Other Identifier | UW Madison | |
| SMPH/NEUROLOGY/NEUROLOGY | Other Identifier | UW Madison | |
| Protocol Version 9/22/2022 | Other Identifier | UW Madison |
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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.
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).
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| CADASIL Registry Participants | Have a loved one or family member with CADASIL, or anyone with or at risk for CADASIL |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Registry | Other | Registry |
|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| CADASIL Consortium | Contact | 833-795-3016 | info@cadasil-consortium.org |
| Name | Affiliation | Role |
|---|---|---|
| Jane Paulsen, PhD | University of Wisconsin, Madison | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Wisconsin | Recruiting | Madison | Wisconsin | 53705 | United States |
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| ID | Term |
|---|---|
| D046589 | CADASIL |
| ID | Term |
|---|---|
| D002544 | Cerebral Infarction |
| D020520 | Brain Infarction |
| D002545 | Brain Ischemia |
| D002561 | Cerebrovascular Disorders |
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| ID | Term |
|---|---|
| D012042 | Registries |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D011996 | Records |
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| D001927 |
| Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D059345 | Cerebral Small Vessel Diseases |
| D015140 | Dementia, Vascular |
| D002539 | Cerebral Arterial Diseases |
| D020765 | Intracranial Arterial Diseases |
| D020521 | Stroke |
| D003704 | Dementia |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007238 | Infarction |
| D007511 | Ischemia |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D009336 | Necrosis |
| D009934 |
| Organization and Administration |
| D006298 | Health Services Administration |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |