The problem in setting research priorities: a layman’s experienceBMJ 2008; 337 doi: http://dx.doi.org/10.1136/bmj.a212 (Published 04 July 2008) Cite this as: BMJ 2008;337:a212
- Lester Firkins
- 1Malvern, Worcestershire
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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