Launch of NeuroCARE
Jan 2025: Our new platform for people in Scotland with a neurological condition, NeuroCARE, launched this month.
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 neurological 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.
How does NeuroCARE help 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 would NeuroCARE help me?
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.
Who can join?
You can join NeuroCARE if you live in Scotland, are over 16, and:
- have, or are under investigation for, a neurological condition, such as multiple sclerosis, motor neuron disease, Parkinson’s or early-onset dementia
- or, you attend an appointment at the Anne Rowling Clinic in Edinburgh
- or, you are the carer or relative of someone who meets either of the options above
Sign-up
If you meet the above criteria, we ask you to a read a patient information leaflet, and then complete a 10-minute online form.
You can sign up quickly and easily at neurocare.scot.
Replacing RowlingCARE
Previously, this platform was known as RowlingCARE. NeuroCARE is very similar to RowlingCARE, but gives more opportunities to both participants and researchers.
If you previously signed up to RowlingCARE, we would love you to sign up again to NeuroCARE, if you still meet the eligibility criteria. Please visit neurocare.scot.
Questions?
If you have any questions about NeuroCARE, please get in touch by email on Anne.Rowling.Clinic@ed.ac.uk or by phone on 0131 465 9500.
Links
NeuroCARE website (external site)
Image credit: Surasak Taykeaw via Getty Images.