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Views & Reviews

The problem in setting research priorities: a layman’s experience

BMJ 2008; 337 doi: (Published 04 July 2008) Cite this as: BMJ 2008;337:a212
  1. Lester Firkins
  1. 1Malvern, Worcestershire
  1. lesterfirkins{at}

    I am a 59 year old former banker. Seven years ago I lost my 25 year old son, Ellis, to new variant Creutzfeldt-Jakob disease (CJD). Until that time I had no knowledge of or interest in clinical trials. It was because of my subsequent chairing of a CJD patients’ charity that I became involved with the world of clinical trials. This involvement took several forms:

    • Attending a “consumer workshop” on clinical trials for CJD run by the Department of Health and the Medical Research Council

    • Co-chairing the steering committee for the prion-1 trial

    • Co-chairing a “new therapies scrutiny group”

    • Chairing monthly meetings of the two principal CJD research establishments in the United Kingdom, to try to ensure that they collaborated with each other, and

    • Membership of the advisory group for a systematic review of treatments for prion disease.

    Obviously, these were all new experiences for me. Until I learnt otherwise I took the consumer workshop—a one day event at which families and carers were brought together and asked to help set research priorities—to be normal practice. A report …

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