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New Therapies Scrutiny Group for Prion Disease

The MRC New Therapies Scrutiny Group for Prion Disease was established in 2005 at the request of the Chief Medical Officer, to provide an independent source of advice on research into the development of potential therapeutics or preventative agents for prion disease. The group is building upon the previous work of the Department of Health CJD Therapy Advisory Group. It advises the MRC on ways of accelerating progress towards clinical trials of new therapeutic or preventive treatments for prion disease, and maintains an overview of other relevant research. The group’s remit relates to research only; it does not advise on patient treatment.

Co-chaired by Sir Mike Rawlins and Mr Lester Firkins, the New Therapies Scrutiny Group for Prion Disease reports directly to the MRC’s Council. It normally meets twice a year, with most meeting papers available through this website.

Terms of reference

The group will:

  • Provide advice to the MRC on potential therapeutics or preventative agents for prion disease;
  • Through a dedicated working group, develop a core set of outcome measures that may be used by clinicians administering experimental treatments for prion disease, with the aim of facilitating data integration and maximising information derived from such treatments;
  • Through a horizon-scanning working group, maintain an overview of research likely to lead to the development of new preventative medications or therapeutics for human prion disease;
  • Identify potential new therapeutic or preventative agents that may be suitable for clinical trial;
  • Seek opportunities to support national and international communication;
  • Report to the MRC’s Council on an annual basis.

 

Contact: Dr Joanna Latimer
Telephone: +44 (0)20 7670 5033
Email: Joanna.Latimer@headoffice.mrc.ac.uk

 

Membership

Name

Affiliation

Co-chairs:

 

Mr Lester Firkins

Malvern, Worcestershire

Professor Sir Michael Rawlins

National Institute for Clinical Excellence (NICE)

Members:

 

Professor Sir Alasdair Breckenridge

Medicines and Healthcare Products Regulatory Agency

Ms Francesca Certo

Leamington Spa, Warwickshire

Professor John Collinge

MRC Prion Unit, London

Professor Janet Darbyshire

MRC Clinical Trials Unit, London

Mrs Janet Gibbs

Enfield, Middlesex

Professor Guy Goodwin

Warneford Hospital, Oxford

Dr Ann Hayes

Rowans, Hertfordshire

Professor Nigel Hooper

School of Biochemistry & Microbiology University of Leeds

Dr Richard Knight

National CJD Surveillance Unit, Edinburgh

Dr Mark McLean

Shankhill Health Centre, Belfast

Professor Roger Morris

Wolfson Centre for Age-related Diseases, King's College London

Dr Declan Mulkeen

MRC Head Office

Professor Pierluigi Nicotera

MRC Toxicology Unit, University of Leicester

Professor Hermann Schatzl

Institute of Virology, Technical University of Munich, Germany

Professor Pam Shaw

Department of Neurology, University of Sheffield

Dr Roberto Solari

MRC Technology, London

Dr John Stephenson

Department of Health, London

Observers:

 

Professor Ian Bone

Principal Investigator, PPS monitoring study

Dr Peter Christie

Scottish Executive Health Department

Mrs Frances Hall

Human BSE Foundation

Dr Elizabeth Mitchell

Department of Health - Northern Ireland

Dr Mair Powell

Medicines and Healthcare Products Regulatory Agency (MHRA)

Dr Kate Richards

SEAC Secretariat

Dr Mike Simmons

Welsh Assembly Government

Mrs Gillian Turner

CJD Support Network

Secretariat:

 

Dr Joanna Latimer

MRC

Meeting agendas, minutes and papers

 

Reports

Report from Professor Ian Bone – Intraventricular Pentosan Polysulphate in Human prion disease. A study of experience in the United Kingdom. Also available is a lay summary of the report written for a general audience.

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