Your participation directly advances our understanding of CADASIL and brings us closer to a cure. Find ongoing studies and learn how to get involved.
CADASIL is a rare disease that has only been identified within the past few decades. As such, there is still significant research to be done to fully understand its pathology, progression, and other distinct aspects.
This research requires willing participants from within the community of CADASIL patients. Below, you can find links to ongoing CADASIL research studies or clinical trials, including information on how your involvement can help us get closer to developing new treatments and eventually a cure.
If your organization or university will be starting a new CADASIL-related research project in the near future, contact us at info@cureCADASIL.org.
We are not aware of CADASIL clinical trials that are currently seeking participants to test treatments (see Active Studies).
Scientific research is needed before drugs and therapies can be tested in humans.
Clinical trials involve people who volunteer to test and help find better treatments.
Once the disease has been studied, clinical trials have been conducted, and a therapy has been proven safe and effective, we are on our way to treating and curing CADASIL!
cureCADASIL is collaborating with members of the Clinical Genome Resource (ClinGen) team to share genetic and health information from patients affected by CADASIL through the ClinGen Patient Data Sharing Program. This information will be collected through the cureCADASIL Family Registry.
Why is data sharing needed?
When a laboratory finds a genetic change (variant) for the first time, often little is known about it. Even if a genetic variant is well understood, data sharing helps increase understanding of a condition's features, which may help identify possible interventions and treatments. The more information collected, the better researchers will understand how genes affect health and, ultimately, how best to care for patients.
Complete these 3 steps to participate:
1. Login to your account (or create an account if you have not) at: cureCADASIL Family Registry.
2. Review and complete the ClinGen Data Sharing Program informed consent.
CADASIL Community Natural History Study — Learn more about this important cureCADASIL-supported study tracking disease progression to inform future clinical trials.
cureCADASIL is aware of three CADASIL Tissue Banks in the US supported by brain and tissue donations by surviving families of CADASIL patients. For researchers interested in CADASIL tissue for research, please contact cureCADASIL. For patients or families interested in donating a loved one's brain or tissue for CADASIL research please contact one of the following:
Michael M. Wang M.D., Ph.D.
University of Michigan, Department of Neurology
VA Ann Arbor Healthcare System, Ann Arbor, MI 48109
Phone: 734-845-5202 | Email: micwang@umich.edu
Helmi L. Lutsep, M.D.
Oregon Health & Science University, Department of Neurology
VA Portland Health Care System, Portland, OR 97239
Phone: 503-494-7225 | Email: lutseph@ohsu.edu