FAQ - CADASIL Research

 

Can I become involved in CADASIL research?

At The University of Cambridge we have an active CADASIL research programme.  We collaborate with other groups throughout the UK who are interested in carrying out research in CADASIL.  

 

Your permission is required for us to be allowed to contact you. If you would like to sign-up to be contacted about research, then please let Molly Henthorn know by emailing mmh64@medschl.cam.ac.uk

 

When the researchers get in touch, they will provide you with a ‘Participant Information Sheet’, which contains all of the information about the study. They can help to answer any questions and discuss the study further with you. If you decide to take part, you will then be asked to sign a ‘Consent Form’, which states that you have read and understand all the information about the study and are happy to take part. 

 

What is the focus of current research into CADASIL? 

• The development of new cognitive tests to measure cognition changes over time in CADASIL patients*
• Research into the apathy in CADASIL, why it occurs and how we can treat it.*
• Research into the prevalence of encephalopathy and other migraine-like symptoms in CADASIL*
• Research into possible beneficial effects of historically low blood pressure in patients*
• Research into the role of leakage of the blood-brain barrier in the mechanism leading to tissue damage seen on MRI scans*
• The development of mouse models in order to understand changes at a molecular level
• The possible application of gene-based therapy
• The use of stem cell research in order to model blood vessel cells and cells of the blood-brain barrier so that drugs can be tested for their effectiveness*

*All areas starred are those we are working on at Cambridge.

 

Do you get any benefits from taking part in research?

The main benefits of taking part in research are altruistic, to help us further our knowledge of the disease and increase the likelihood of us being able to treat it.

We are able to refund your travel expenses for you, but do not give you any other monetary benefit. Further, you do get time with the researchers in that area which provides you with an opportunity to ask questions. You will also receive a report back about the findings of the research study once it is all complete. 

 

What are the drawbacks of taking part in research?

The main drawback for a lot of patients involved in our research is that it often requires you coming to Cambridge, which can be a long way for some patients. Further, the procedures that are involved in the research may not always be enjoyable. For example, if the research involves taking blood then you may not enjoy the blood test. Or if the research involves an MRI scan then some people can find this claustrophobic and noisy. Some studies that involve testing medications or other medical procedures can have some risk from the potential side effects, although we are currently not doing this type of study at Cambridge. 

 

Every study is reviewed by an independent ethics committee before it is able to begin, to make sure that any risk is minimal and that the benefits outweigh any risks. Participants have all of the procedures and risk explained to them in an information sheet that they read before signing up to the study.

 

Can we help raise money for CADASIL research at Cambridge?

Medical research is very expensive. We are fortunate to receive support form a number of government and charity funders. However additional support is always very helpful in enabling us to carry out CADASIL research. We have a CADASIL fund which is run through the Addenbrooke’s Charitable Trust. This allows gift aid to be claimed back on donations which increases the amount we receive for donations from taxpayers. If you would like to donate you can find details here.