Join an Ongoing Study
“Clinical Trial Ready” Studies
In CADASIL, a “clinical trial ready” study typically refers to a natural history, registry, or biomarker study designed to help prepare researchers for future treatment trials. Because CADASIL is a rare disease that progresses slowly and varies significantly between patients, researchers first need a clearer understanding of how the disease evolves over time and which measurements are most reliable for tracking progression. These studies help identify and follow genetically confirmed CADASIL patients, collect MRI and biomarker data, standardize cognitive and neurological assessments, and develop biobanks of blood, DNA, and imaging samples. The ultimate goal is to determine which patients may be best suited for future clinical trials, what outcomes should be measured, and how researchers can most effectively evaluate whether a therapy is working.
Several ongoing studies in the United States are helping build this “clinical trial ready” foundation for CADASIL research. At present, several studies are listed as “recruiting” on clinicaltrials.gov. Contact information for each study is available below, and interested individuals are encouraged to reach out directly to the participating centers for specific details regarding eligibility and participation. Together, these efforts are helping researchers prepare for future therapies aimed at targeting NOTCH3 dysfunction, protein aggregation, vascular smooth muscle injury, and other underlying disease mechanisms.
Become part of the NIH/NHLBI CADASIL Natural History Study(Open to anyone with a definitive diagnosis of CADASIL or healthy participants in your family.)
Location: Bethesda, MD
Contact: William R Whalen, C.R.N.P.
Phone: 301.402.9841
Email: william.whalen@nih.gov
Become part of the VASCBrain Study (Open to anyone with a definitive diagnosis or at risk of CADASIL .)
Location: New York, NY
Contact: Elahi Lab
Email: vascbrain@mssm.edu
Become part of a Mayo Clinic Study (Mayo Clinic currently has three studies open for CADASIL and SVD. Please refer to the website for diagnosis and state resident requirements.)
Retina is a Marker for Cerebrovascular Heath
Location: Jacksonville, FL
Contact: Meredith McDonald
Phone: 904.953.4200
Email: mcdonald.meredith@mayo.edu
Become part of a CADASIL Consortium Study (Open to anyone with a definitive diagnosis or at risk of CADASIL, who are able to have an MRI.)
Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL) Study
Currently the CADASIL Consortium is accepting participants on a limited qualifying basis. To see if you qualify, reach out to the email below.
Location: 12 locations across the USA
Phone: 833.795.3016
Email: info@cadasil-consortium.org
Website: www.cadasil.wisc.edu
The CADASIL Consortium strongly encourages anyone interested in participating in the study, including those who may not currently meet eligibility requirements, to register here: