Sponsored Research Projects into PSP
1995/1996 – Dr Peter Pramstaller (Italy/Austria) [under the direction of Professor Andrew Lees] - a six month PSP Research Fellow. His work included:
collection and collation of all existing research into PSP worldwide and recording this on Reference Manager
questionnaire on familial susceptibility
design of a Neuro-Epidemiological Project in the Tyrol (NEPT) (ongoing)
research into Post-Encephalitic Parkinson Syndrome and PSP
the effect of PSP on the bladder and sexual dysfunction.
1996/1998 – Dr Thomas Bak [under the direction of Professor John Hodges]
A longitudinal study into the neuro-psychological, neuro-psychiatric and behavioural effects of PSP on patients across the UK (at Cambridge - Joint Award with the University of Cambridge). Dr Bak was awarded a Research Fellowship appointment at the Cognitive & Brain Sciences Unit in Cambridge as Research Assistant to Professor John Hodges.
1997/1999 – Dr Huw Morris [under the direction of Professor Andrew Lees]
Research into genetic susceptibility in PSP at the Institute of Neurology in London [Dr Nick Wood, Principal Investigator]. In 1998 Dr Morris was awarded a 3-year Research Fellowship to continue his research by the British Medical Research Council (MRC). The MRC awarded him a 3 year funded Fellowship to continue this work in the second year of his PSP Association grant, so he has completed some five years on this important research.
1999/2000 – Dr Uma Nath [under the direction of Dr David Burn]
Nationwide ‘Russian Doll’ epidemiological and PSP prevalence study at RVI, Newcastle upon Tyne. This was supported by the Association of British Neurologists and co-ordinated across the UK by Professor Andrew Lees with PSP Association input. It confirmed Dr Anette Schrag’s work the previous year, in the Greater London area, that PSP was an order of magnitude more common than previously assessed, with a prevalence of at least 5 per 100,000 of the population. Leading neurologists now believe there could be as many as 10,000 living patients across the UK.
2000 (March - June) - Dr Chloe Stallibrass
Alexander technique and its effect on a PSP patient.
1999/2001 – Dr Tamas Revesz & Tammaryn Lashley
Tau protein and Messenger RNA research [directly consequential of Dr Huw Morris’ research] at the Institute of Neurology. Dr Revesz worked in a team with Dr Sue Daniel and Professor Brian Anderton on this research. Tammaryn Lashley was his Research Assistant. She is now continuing her work on PSP in the USA, having gained her PhD in London with this work.
2000/2001 – Dr Roberta Vitaliani [under the direction of Professor Scaravilli]
Investigation of spinal cords of patients with PSP. In Italy and at the Institute of Neurology in London.
2000/2003 – Dr Adam Zermansky [under the direction of Dr David Burn]
Using the mass of data collected in Dr Uma Nath’s epidemiological study, Dr Zermansky carried out a three-year Natural History, Risk Factor and Magnetic Resonance Spectroscopy study into PSP at Newcastle upon Tyne. This continuing study used data collected by Dr Nath to look at geographical clustering, familial linkages and environmental factors in triggering PSP.
2001/2002 Dr David Nicholl [under the direction of Professor Robinson]
DNA Bank in Birmingham, tied in with the Riluzole Trial.
2001/2003 Dr Bas Bloem [under the direction of Professor Andrew Lees]
The initial study was followed by a second international study into falls in PSP/MSA and PD. The initial study involved research into fractures from falls in PSP, with questionnaires sent to afflicted families within the PSP Association across the UK.
1999/2004 - Dr Anette Schrag [under the direction of Professor Niall Quinn]
The design of a ‘Quality of Life’ Instrument for medical professionals on assessing the effects of PSP on patients’ and carers’ Quality of Life.
2000/2004 – Alice Everett, Linda Donald & Gini Hearn
Assistants to Dr Thomas Bak in continuation of the longitudinal study into the effects of PSP on behaviour at the Cognitive and Brain Sciences Unit in Cambridge. Alice Everett moved to another appointment at the end of the year 2000, and Linda Donald took over. She was followed by Gini Hearn at the end of 2001.
2001/2004 – Professor Nigel Leigh
A trial of the effects of Riluzole – a drug, which was beneficial in Motor Neurone Disease – on PSP and MSA patients. The trial, sponsored by the European Union, will cover Germany, France and the UK, and a total of 400 PSP and 400 MSA patients, looking at a wide range of related subjects concerning patient care.
2001/2004 – Dr Dominic Paviour [under the direction of Professor Andrew Lees]
Further research into genetic susceptibility in PSP as a three year Research Fellow at the Rita Lela Weston Research Foundation. This may be extended for a further year.
1999/2000 – Dr Rohan de Silva [under the direction of Professor Andrew Lees]
Sequence analysis of genomic tau and Messenger RNA at the Institute of Neurology. Following up Dr Morris’ work, Dr de Silva was appointed and remains as a PSP Research Fellow. (Continued as a PSP Research Fellow 2001/2004, but sponsored by the Reta Lila Weston Foundation).
2001/2006 - Dr Peter Pramstaller
GenNova - a Project based on NEPT in the Tyrol, sponsored, over 5 years, by Local Government in Italy.
2003/2005 – Dr Pau Pastor, Dr Alison Goate & Prof Eduardo Tolosa
Genetic analysis of 17q21 region of familial fronto-temporal dementia in sporadic tauopathies. Work will largely be undertaken in the USA.
2003/2005 –Dr Naomi Turner [under the direction of Dr David Burn]
A continuation of the work undertaken by Dr Adam Zermansky, including 2-year Clinical Magnetic Resonance Spectroscopic and Neuro-chemical studies in PSP
2001/2004 – Dr Justo Garcia de Yebenes
Familial research into PSP in Spain. A re-submitted research proposal. Some of this special Spanish family have now been assessed in recent PET and MRI scannings in London, the latter done by Dr Paviour.
2003/2004 – Dr Thomas Bak [under the direction of Professor John Hodges]
Continuation of work in Language, Semantics, Visuo-spatial functions & behaviour in PSP. Contribution of cortical & sub-cortical pathology. This work was previously funded by the MRC.
2004 – Dr John Steele
Cataloguing & repatriation of research material from Guam to be lodged at The Sara Koe PSP Research Centre. Lecture Tour on PSP to major UK teaching hospitals. The extra cost would go towards a video production, which he would coordinate, under the direction of Professor Andrew Lees (UK) and Professor Lawrence Golbe (USA) for neurologists in the UK and USA.
2005 - Dr Naomi Warren (nee Turner). Second year of Clinical, Magnetic Resonance Spectroscopic and Neuro chemical Studies in Progressive Supranuclear Palsy.
2005 - Dr Pau Pastor. Second year of investigation of rare variants forming a new pathogenic haplotype associated with PSP/CBD patients at the 17q21 region.
2005 - Dr Rohan de Silva. Investigating the comparative classification of ‘atypical’ and classical PSP brains, with a view to identifying novel monoclonal antibodies.
2005 - Dr Gavin Giovannoni. Investigating Cerebro Spinal Fluid in PSP and related tauopathies to identify biomarkers using discovery-based technologies (proteamics).
2005 - Dr Dominic Paviour. A further year’s research of a prospective Clinico-pathological study on PSP using Serial MRI Scanning with registration with a view to identifying a diagnostic marker for PSP.
2005 - Dr Diane Hanger. Investigation of the link between tau phosphorylation and PSP for three years from 1st October 2004.
