Below is a link to Erik Minikel’s blog sharing his perspective on the Ionis Community Statement regarding the recruiting pause of the Prion Disease clinical trial.
Link – Why the ION717 trial is paused
from: CureFFI.org
Post by Eric Minikel from Prion Alliance
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.
