NeuroCARE

Our platform for people in Scotland with a neurological condition, and their carers, to sign up to help research and find out about opportunities to take part in studies and trials.

Condition(s)

  • All neurodegenerative conditions & carers
  • Cognitive disorders
  • Huntington’s disease
  • Motor neuron disease
  • Multiple sclerosis
  • Neuroinflammatory disorders
  • Parkinson’s & movement disorders

Project type

  • Understanding the condition

About the project

NeuroCARE is an electronic record of healthcare data that allows us to conduct research, identify research projects that are relevant to individuals, and to identify people who can help shape future research. For example, this information includes how your condition affects you, when you were diagnosed, what investigations were carried out, and current management.

NeuroCARE also enables people living with a neurodegenerative condition in Scotland to consent to provide useful information and biological samples for research, for example a blood sample for DNA analysis, a brain scan, or agreeing to use our App to record samples of your speech.

NeuroCARE was called RowlingCARE until August 2023.

Why is it important for researchers?

Every year at the Anne Rowling Clinic we make thousands of clinical contacts with people who have a neurological condition. We strive to deliver the best care possible, and in the delivery of that routine care we generate a wealth of data about the people we see and the conditions they have.

This data is a rich source of information for research. By comparing relevant healthcare data from many people, our University and NHS researchers can study the variation in these conditions in great detail. We can determine patterns and clues as to how to improve care and ultimately develop personalised medicines and clinical trials.

How is it useful for you?

If you are on the NeuroCARE register, and have given us your permission, we will be able to contact you when we have a research project or drug trial that you might be interested in and eligible for. You will then be among the first to hear about the new research or trial, and have the opportunity to sign up.

If you have additionally consented to provide a blood sample, undergo a retinal (eye) or brain scan, or to use our App to record your speech, we will be able to use this important data for research.

Find out more and sign-up

At present, it is only possible to sign up during a visit to the Anne Rowling Clinic. Please speak to our staff at your next appointment.

We are working towards providing an electronic sign-up facility for NeuroCARE.

Funder(s)

The Anne Rowling Regenerative Neurology Clinic

Publication(s)

N/A

Contact

NeuroCARE team
anne.rowling.clinic@ed.ac.uk
0131 465 9517
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