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Please see below for links to a number of organisations that may be of interest:
MRC Prion Unit
MRC Clinical Trials Unit (CTU)
ClinicalTrials.gov
Current Controlled Trials
Current Controlled Trials: An opportunity to help improve the quality of clinical research
The National Creutzfeldt-Jakob Disease Surveillance Unit (NCJDSU)
CJD Support Network
Alzheimers society
Department of Health - Creutzfeldt-Jakob Disease (CJD)
Contact a Family - For families with disabled children
Genetic Alliance UK
James Lind Alliance