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Do I have to have a positive CADASIL blood test to participate?
Participants in this study must be 18 years-old and may or may not have a NOTCH3 gene mutation that causes CADASIL.
What if I don't want to know if I have CADASIL?
Participants retain their rights to learn their NOTCH3 results or not. Participants who do not wish to learn their gene status after testing will not be excluded from participation.
How long will I be at the study site?
The in-person assessments include questionnaires, neurological examination, cognitive testing, brain MRI, and blood draw. Additional contact will occur by phone, mail, email, or internet and will be referred to as “remote visits”.
Does this study offer a treatment?
This is not a treatment study, it is a study to develop the best methods for future clinical care and clinical trials for experimental treatments. Researchers will use the information and samples to prepare data for review by the Critical Path Institute in concert with the Food and Drug Administration so future treatments can be delivered to persons with the CADASIL gene at the best time possible.
Will the study test my blood for CADASIL if I have a family history?
The study has a process to allow genetic counseling and testing for a limited number of participants.
Will all of my test results be sent to my doctor? Will I get the results of my MRI?
You and your doctors will not be told the results of the research tests with the exception of the genetic results from InformedDNA. If you chose to learn the results of that test, you may share it with your doctor and others.
The MRI scan for this study is for research purposes only, it will not be reviewed by a radiologist involved in your health care and the results will not be shared with you.
What expenses are covered by the study?
There is no cost to participants for study activities or procedures. Participants will be eligible to receive partial or complete reimbursements for study related travel costs such as travel expenses and subsistence costs.
Participants will be paid up to $100 per visit ($300 total) for completing this study.
Why should I join this study?
Observational studies are an essential first step in learning more about disease progression and the development of new treatments. By participating you are helping to advance scientific knowledge that will be beneficial to future individuals with CADASIL.