Visit to Anne Rowling Regenerative Neurology Clinic
A group of around 20 members of the Edinburgh Branch of Parkinson’s UK were welcomed for a visit to the Anne Rowling Regenerative Neurology Clinic on February 18, just four weeks after it was formally opened. The Clinic, housed in a new building adjacent to the Edinburgh Royal Infirmary, is a charitable University of Edinburgh clinical research facility focusing on a wide range of neurological condition, including multiple sclerosis, motor neurone disease, young onset dementia and, most importantly for us, Parkinson’s disease. It uses clinical consultations to support the research activity in order to study and eventually develop treatments for these conditions. The funding of this exciting development has been substantially supported by a donation of £10 million from the author JK Rowling in memory of her mother, who died in 1990 from complications related to multiple sclerosis.
We were introduced to the centre by three of the staff working in the newly opened facility. Shuna Colville, David Hunt and the project manager Mindy Quigley described the value of bringing together patient clinics and research laboratories, and the potential of disease registries and DNA banks to help researchers understand more about neurodegenerative diseases and achieve the ultimate aim of slowing, stopping and reversing the degenerative processes. They stressed the value of having clinics and laboratories in one building, particularly in the light of recent advances in taking skin cells from patients to develop stem cells and ultimately to grow neural cells. Moreover, they benefit greatly from the close proximity of the Scottish Centre for Regenerative Medicine, where so much work on researching and developing stem cell technology is underway. Patients who have consultations here now have the opportunity to register on the database, give samples and take part in detailed studies or clinical trials. Although not all clinics have yet transferred to this site from the Western General Hospital, more than ten neurologists are now holding clinics here, drawing on the expertise of research nurses, psychologists and laboratory staff. Projects already underway include; the Voice Banking Initiative, a collaboration with Edinburgh Informatics to generate bespoke synthesised voices for patients who have voice difficulties; Cognition in MS, involving study of language and visual function in patients with multiple sclerosis; and projects to monitor and improve care and outcomes for motor neurone disease patients.
In the near future, the transfer of all Clinical Neurology to the Royal Infirmary of Edinburgh site is expected to bring more advantages. The speakers stressed the value of understanding the incidence of diseases, and a Scotland-wide registry of motor neurone disease patients was already being established there. Larger numbers meant that a Sottish registry would not be possible for Parkinson’s or MS, but patients attending the Anne Rowling Clinic would have opportunities to take part in clinical trials and help work toward improved treatments for their conditions.
Our group was then given a tour of the building, seeing the voice recording studio, offices, treatment rooms which had been thoughtfully designed with input from focus groups of patients, a well-equipped room for relatives or for research interviews, an area for patients’ children and a particularly engaging high-tech loo. The Rowling donation has allowed provision of a greater degree of comfort and privacy for patients than might have been possible on a tighter budget.
Article contributed by Sheila Edward and Ken Bowler, Edinburgh Branch members.