Researchers need people who have had a stroke to share their experiences. They want to find out about your current health and well-being, and about the type of treatment and care you received after your stroke.

‘We are interested in finding out how healthy and well you feel after your stroke, and to what extent the stroke has impacted on your day-to-day life. We are especially looking to find out how many people are affected by fatigue or mood changes after their stroke.’

Why is the research being done?

Researchers want to invite people with stroke to share their experience on how stroke affects their health and well-being, in the short and long-term, with consideration of a range of factors including age, ethnicity, type of stroke etc.

They want to know which care and support services stroke survivors look for and which ones they are able to access.

Researchers also want to compare the experiences of stroke survivors with and without CADASIL so that they can determine if their support needs differ.

By gathering lots of information on experiences of people who have had a stroke, or those who care for someone who has had a stroke, researchers can determine how health services can best be delivered.

Who can participate in the research?

Any person who lives in Australia who has ever had a stroke (with or without long-lasting effects on their health). Participants must be able to read and respond to questions in English however is it is acceptable to have help from a family member of carer.

Take the online survey

You can read the participant information statement, then take the survey here:

Survey for people without CADASIL who have had a stroke

Survey for people with CADASIL-stroke

Participate in an interview

Researchers also need people who have had a stroke and/or their carers to take part in an in-depth interview over the telephone or via the internet.

To be interviewed, you must be able to:

  • access a telephone or an internet-based portal (Skype or Zoom)
  • speak comfortably for between 30 to 60 minutes on the telephone or online
  • speak reasonably well in English

You may ask your carer or a family member to assist you during the interview, if needed. If you are based in Sydney or Newcastle (NSW) and unable to be interviewed by telephone or internet, you may request to be interviewed in person at either UTS or the Hunter Medical Research Institute building.

Participants will receive a $25 gift card as a reimbursement for their time.

To discuss an interview, or find out more about the survey, please contact Ms Lichin Lim on 0433349505 or

What is CADASIL?

CADASIL stands for Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy.

CADASIL is a progressive, genetic disease that affects the blood flow in small blood vessels and in particular the cerebral vessels within the brain. Two thirds of people with CADASIL unfortunately have recurrent strokes during their life, and currently there are no effective treatments. You can read more about CADASIL here on the Australian CADASIL Support Network website.

Lead Researchers

A/Prof Beata BAJOREK, Clinical Academic Pharmacist, Graduate School of Health, UTS
Prof Chris LEVI, Neurologist/Stroke Specialist (John Hunter Hospital; HMRI; Director – SPHERE)
Dr Chris JACOBS, Genetics Counsellor, Graduate School of Health, UTS
Mr Bob WYBORN, Patient Advocate & Change Champion & ACSN President (Australian CADASIL Support Network)
Dr Andrew BIVARD, Neuroscientist (Royal Melbourne Hospital)
Dr Sonu BHASKAR, Neurologist + Neuroepidemiologist (Liverpool Hospital)
Ms Lichin Lim, Clinical Academic Pharmacist and Research Assistant, Graduate School of Health, UTS

The study is being supported by Graduate School of Health, University of Technology Sydney.

This study is also inviting people from the Hunter Stroke Research Volunteer Register to participate. To be invited to participate in other studies in stroke rehabilitation and recovery, register here.