In your opinion, what is the single biggest challenge for researchers investigating neurodegenerative disorders like Alzheimer’s or Parkinson’s?
I feel that a big challenge if not the biggest challenge for researchers investigating neurodegenerative disorders is the difficulty of disease definition and the overlap with ageing. It is worth restating the obvious fact that diseases as such do not exist although clearly unwell people exist. The diseases are merely classifications that we use to help us understand disease in general and to manage patients individually. Thus we use many different dimensions to classify neurodegenerative diseases. Clinicians tend to view post mor-tem examination as the gold standard for diagnosis but in each case neuro-pathologists also have great difficulty in deciding what is out with the common ageing process. We need greater clarity about which dimensions we are talking about, for example whether it is a particular molecular pathway, a constellation of histological features or a variety of functional deficits. As our understanding in-creases it may well be that we learn to distinguish a number of different processes within the Alzheimer rubric. How we then relate these processes to the processes that occur to us all as we get older will remain a major challenge.
At the moment, what area of your own personal research gets you excited?
My interest has always been in the younger patient, in particular those with familial dementias as this reflects clinical practice in the UK where it is the rare and younger patients that tend to be referred to neurologists. It has been a fascinating area of research to see how a rare type of Alzheimer’s disease, or of the other degenerative dementias that are familial, can be very informative. What has remained has been the interest in the problems that are presented in the neurology clinic and with experience the increasing appreciation of the heterogeneity of patients which in itself must hold important clues.
How can people with neurodegenerative disorders contribute to the prioritization of research?
Each individual with a neurodegenerative disorder and their family brings a unique experience. The prioritisation needs to be a partnership and a dialogue around what is important and what is a tractable problem. It can be easy to forget though that there are an enormous number of skills in the patient community that ensures that it is a very rich partnership.
What kind of impact do you think JPND has had to date on the ND research community in Europe?
JPND has had a major impact on neurodegeneration research in Europe and is looked upon as a model around the world. Although competition to ensure funding goes to the best sciences is essential, collaboration is the future. JPND has provided the infrastructure for safe and creative collaboration.