Welcome to the CADASIL website; a resource for those diagnosed with CADASIL, their relatives and carers. As CADASIL is a rare condition, little reliable information is available on the internet. On this website we hope to be able to provide up-to-date and accurate information. We hope that the website will expand over the coming months and years and would welcome input from patients and family members. In addition to providing useful information for CADASIL patients and relatives we also supply links to other websites where more information can be found.
The information on this website has been primarily provided by Professor Hugh Markus, Professor of Stroke Medicine at the University of Cambridge and Consultant Neurologist at Addenbrooke’s Hospital, Cambridge and by Glen Brice, Genetic Counsellor from the Clinical Genetics Department at St George's Hospital, London. Together, we have been involved in caring for CADASIL sufferers and their families for many years and have a wide range of experience in dealing with the problems associated with the condition.
As with any medical condition, we do rely on hearing the experiences of patients and family members in order to develop new services which better cater to the needs of those affected. If you have any suggestions for improvement to the website or new sections which you think we should add, please do contact us. Feedback or suggestions can be submitted here.
A big thank you to CADASIL Support UK, who have raised £15,000 to help support us with our ‘CADASIL in a dish’ study, run by Dr Alessandra Granata at the University of Cambridge.
Dr Granata’s research uses skin cells collected from patients attending the national CADASIL clinic at Addenbrooke’s Hospital and turns them into stem cells using a process called reprogramming. These stem cells can then be used to create models of the blood vessel cells found in the brain. This research is very exciting as it allows us to directly study blood vessels that would usually not be accessible in people with CADASIL.
Having these models of ‘CADASIL in a dish’ allows Dr Granata and her team to investigate why the blood vessels become damaged in CADASIL and test drugs that might protect them.
If you would like to learn more about the ‘CADADIL in a dish study’, you can watch Dr Granata’s talk from the 2024 CADASIL meeting here!
Once again, a huge thank you CADASIL Support UK and to everyone who has donated!
A recent study, led by Dr Nontapat Sukhonpanich, has shown that the prognosis of CADASIL seems to be improving!
The study assessed 555 patients from the Cambridge CADASIL register who were recruited between 2001 and 2023. The results showed that the age of stroke onset significantly increased over time, meaning that patients recruited later in the study were older at the time of their first stroke than those who were recruited earlier in the study. Patients recruited to the study after 2016 also had a lower risk of stroke and dementia, (whilst controlling for other risk factors), compared to those who were recruited before 2016. This all suggests that the prognosis of CADASIL is improving!
Although the researchers acknowledge that these changes could be due more awareness of CADASIL leading to identification of milder cases and better control of risk factors such as smoking, their results were the same even after controlling for risk factors and mutation sites.
You can read more about this study here!
The annual Cambridge CADASIL meeting returned on Tuesday 11th March 2025 at the Cambridge Biomedical Campus and online.
If you were unable to join us you can catch up on the day's events here!
We would like to take the opportunity to remind you that anyone who is interested in participating in our research (either as a CADASIL patient or as a healthy volunteer) would be very welcome to get in touch. If you would like to sign-up to be contacted about research then please contact: mmh64@medschl.cam.ac.uk. For non-research related queries please email info@cambridgestroke.com.