Clinical trials are the final phase in the lengthy drug development process. They are an essential step before new more effective treatments can be introduced. Many trials of new Parkinson’s treatments struggle to recruit sufficient numbers of suitable volunteers!
LOCAL research studies and trials – Rowling CARE
Traditionally, Parkinson’s studies have recruited selected individuals over a defined time period in specialised research settings. These studies fail to provide the opportunity for the majority of PwPs to participate in high quality research and may not be representative of the wider Parkinson’s population.
We seek to link routinely collected healthcare data from all consenting PwPs attending NHS clinics on a long-term basis. This will be done by asking people to sign up to a research registry called ‘Rowling CARE (Clinical, Audit, Research, Evaluation)’.
After signing up to Rowling CARE, PwPs being seen in selected movement disorders clinics in Edinburgh and Dundee will have a comprehensive clinical dataset collected, including measures of motor function, quality of life, cognitive performance and other non-motor symptoms. DNA will also be collected to understand the influence of genetics on the condition. This information will be used to identify suitable individuals for new research studies and clinical trials. Our aim is to classify PwPs into distinct subgroups and direct them towards research that is most suitable for them.
We recognise that many PwPs will be managed outwith these selected clinics. We are working closely with PD Nurse Specialists – who see virtually all PwPs on at least an annual basis – to ensure that an abbreviated clinical dataset can be collected for clinical trial pre-screening, service planning and other purposes.
The easiest way to sign up to Rowling CARE is online at www.rowling-care.org.uk. This is free, quick and easy. If you prefer to complete a paper form, you can request this on the website.
For further information contact Dr David Breen, Consultant Neurologist (David.Breen@ed.ac.uk).
Also, see the talk given by Dr Gordon Duncan to the Edinburgh Branch in January 2020 for information about specific local trials.
To find out about current UK and international trials:
- Parkinson’s UK has produced an on-line tool enabling you to search for opportunities to get involved in your area of the country by simply clicking on this link and entering your postcode.
- Visit this section of the NHS Research Scotland website
- The Michael J Fox Foundation also has a clinical trial finder