Research
The Sara Koe PSP Research Centre
International Medical Workshops
The Role of Pharmaceutical Companies
Overview
Research worldwide into PSP is still very limited, with the USA 'Society for PSP' and The PSP Association currently undertaking the main burden; each sponsoring similar levels of research, coordinated closely by each charity's respective Medical Advisory Board, the chairman of each being a member of the other board.
Professor Andrew Lees, Chairman of the
PSP Association's Medical Advisory Panel
Apart from research sponsored by these two charities, almost all other research into PSP is part of research into broader fields; looking at groupings of neuro-degenerative diseases, mainly Parkinson's Disease (PD), Multiple System Atrophy (MSA) and PSP, or Alzheimer’s Disease (AD) and PSP.
UK Government research is undertaken by the Medical Research Council, whose funding into PSP is currently limited to supporting the Cognition and Brain Sciences Unit in Cambridge and, jointly with The PSP Association, sponsoring research into hyper-phosphorylation. The European Union has funded larger studies, such as the Trials in Germany, France and the UK into the effects of a drug called ‘Riluzole’ on PSP and MSA patients, but nothing directly into PSP. There is limited US Government funding at their National Institute of Health into PSP, which is linked closely with the research sponsored by the US Society. Other research worldwide into PSP is very limited.
The fundraising efforts of The PSP Association have allowed us to sponsor an active programme of research into PSP which had, hitherto, been seriously neglected, particularly in comparison with the impressive level of research into Alzheimer's, Parkinson's and Motor Neurone Disease. All these, and PSP, are related neuro-degenerative diseases; to the extent that research into one could unlock the 'key' to the cause, treatment or even cure of the others.
The PSP Association has, since it was registered, sponsored eleven Research Fellows and seven Research Assistants in London, Birmingham, Cambridge, Newcastle the USA and Spain. The latest updates on PSP research are listed in our PSP Bulletin newsletters, which are sent out three times a year to subscribers of The PSP Association.
The Sara Koe PSP Research Centre (SKRC)
The Sara Koe PSP Research Centre was set up in January 2002 at the Institute of Neurology in London to coordinate and provide administrative support for those involved in PSP research within the UK, and as a link with PSP research worldwide. The Centre also administers a PSP DNA and Brain Bank.
The opening of the Sara Koe
PSP Research Centre
It is closely linked to the Queen Square Brain Bank, which stores the brains of people who have died form various neuro-degenerative diseases. The SKRC was officially opened by our Patron HRH The Duchess of Gloucester, GCVO, in April 2002.
This Research Centre, now part of the Institute of Neurology in London, is the first dedicated PSP Research Centre in the World. The PSP Association was involved in the setting up of the SKRC and committed, subject to available funds, £100,000 a year initially (rising annually with inflation) from 2002 to its work, in the form of the basic salary of a Research Fellow, a Technician and an Administrator.
International Medical Workshops
The PSP Association has to date run six International Medical Workshops attended by leading scientists and neurologists in the neuro-degenerative field from across the world.
1996 – First International PSP Medical Workshop or Brain-storming Meeting
This was held in October 1996 at the Marie Curie Cancer Care Institute near Oxsted in Surrey; and pointed the way to research into PSP and its genetic component. This set the way ahead for research into PSP. It led to the sponsorship of Dr Huw Morris as The PSP Association’s (and later the MRC’s) Research Fellow looking into Genetic Susceptibility research.
1999 – Second International PSP Medical Workshop
The 1999 Workshop was held in the State Rooms of Stowe School, Buckinghamshire, for some 70 of the world’s leading neurologists, covering research and clinical aspects of PSP, Cortico Basal Degeneration (CBD) and Multiple System Atrophy (MSA).
2001 – Third International PSP Medical Workshop
A further two-day Workshop in 2001, again at Stowe, held jointly with the Alzheimer’s Disease Society, for leading neurologists from around the world focusing on tau and amyloids. There was one day on each disease. Both days reflected the overlapping areas of research and the growing promise of ‘light at the end of the tunnel’ in finding the cause, effective treatment and cure of these two diseases.
2003 – Fourth International PSP Medical Workshop
The fourth biennial International Medical Workshop was held in at Stowe July 2003, attended by leading names in the International field of neurology, including scientists from the USA, Brazil, Austria, Iceland, France, Germany, Spain, Italy and the UK. The focus of the Workshop was ‘Earlier and better diagnosis of PSP’.
2005 - Fifth International PSP Medical Workshop
The fifth International Medical Workshop took place on Friday 8th July 2005, at the National Hospital for Neurology, again attended by leading neurologists and scientists from around the world. The Theme of the Workshop was ‘PSP as a Test-bed for Neurodegenerative Disease-modifying Treatments’. Professor Andrew Lees, Chairman of The PSP Association’s Medical Advisory Panel and Director of the Reta Lila Weston Foundation at the Institute of Neurology, was in the Chair.
2007 - Sixth International PSP Medical Workshop
Our sixth Workshop was also held at Queen Square. The focus was on ‘Clinical Drug Trials into PSP’. Once again, Professor Colin Blakemore, Chief Executive of the Medical Research Council, gave an encouraging opening address after which, chaired by Professors Andrew Lees in the morning (two sessions) and John Hardy in the afternoon (three sessions), presentations on selected themes were followed by focused discussions on each theme.
The morning sessions looked at the Natural History of PSP, trial design, patient selection, surrogate markers for diagnosis and symptomatic drug therapies for PSP. This was followed by ‘The Lithium Story’, the evidence for its use both for PSP and across tauopathies. The afternoon sessions looked at other candidates for tau phosphorylation inhibitors, other possible disease modifying treatments, the current Valproic Acid Trial in and control of PSP clinical trials in the (DeNDRoN) and across the European Union. This was followed by a final session on stem cell research possibilities and an overview of why ‘Basic science advances in neurodegenerative diseases haven’t yet translated into bedside treatments’. The Workshop concluded with an animated open discussion.
The role of Pharmaceutical Companies
Pharmaceutical Companies, as businesses, tend to ‘put their money’ into research into those diseases whose prevalence is sufficient to give a good return for successful investment. Incentives, in terms of extending intellectual property rights on one of a pharmaceutical company’s portfolio of drugs are now available, though EU and US legislation is now in place to encourage them to invest in rarer diseases, with a prevalence of less than 20 per 100,000 of the population. PSP is thus defined as a rarer disease and The PSP Association seeks to develop relationships with Pharmaceutical Companies involved in research into neurodegenerative diseases, by encouraging them to look at PSP as a possible 'test bed' for the development of disease modifying drugs both for PSP and for related diseases. Enzymes that can reduce the level of phosphorous in neuro fibrillary tangles of the protein 'tau' in Alzheimer’s Disease and in PSP exemplify such possibilities.
Find out more about sponsored Research Projects into PSP
Statement of The PSP Association’s Policies on Peer Review, Animal Research and Human Embryos
