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What happens in the CADASIL clinic?

Following your referral to the CADASIL Clinic from your GP or your local Neurologist you will be seen in the CADASIL Clinic at Addenbrookes Hospital, Cambridge. This is usually held on the first Tuesday of each month but this varies on occasions. At this visit, you will be seen by a Consultant Neurologists with a particular interest in CADASIL, Professor Hugh Markus. You may also be seen by a Registrar in neurology.

In addition you may meet a Genetics Counsellor, Glen Brice, who can answer any questions you may have regarding genetic issues related to CADASIL, concerns related to genetic testing or questions about insurance.

For some patients it may be appropriate to see our Clinical Psychologist to discuss specific issues about adjusting to the diagnosis of CADASIL. In some cases it may be appropriate for you to have a neurocognitive assessment where the Clinical Psychologist will assess your thinking skills as part of your clinic visit.

In most cases we will need to see your MRI brain scans. If these have been carried out at your local hospital we will need to obtain copies. If an MRI scan has not been carried out or the results are not available then a scan may be arranged for you at Cambridge and on some occasions a skin biopsy may be aranged and blood samples may be taken for routine clinical management.

You will be given the opportunity to ask questions in the clinic and will also be given a contact number should you have any questions which arise after the visit. It is often suggested that bringing a friend or relative to the consultation can be helpful.

There is a large research interest in CADASIL at Cambridge and you may be asked whether you would like to take part in research studies. This is entirely voluntary and if you do not wish to take part, this will not affect your treatment in any way. We do appreciate it when individuals consent to take part in research studies but understand it is not always something which patients wish to undertake. 

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