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Understanding Clinical Trials

Please find below links to some general information on clinical trials which may be helpful in the lead-up to the commencement of clinical trials for prion disease:

U.S. Department of Health & Human Services – Participating in Human Research
You may  find the videos to be very approachable, and they have a very handy PDF with questions that people should consider asking a study investigator.  Many of their resources are available in English and Spanish, which is a nice bonus!

U.S. Food & Drug Administration  – Clinical Trials: What Patients Need to Know 
Explanations are very basic, but include special pages on Informed Consent and explain the difference between a trial and medical treatment which is very helpful, especially for communities like ours that are relatively new to trials.

U.S. National Institute of Health – Clinical Research Trials and You
This site has some great tools as well, although they may be a little bit more technical that the Health & Human Services ones.