Nina Oberbeck from Gate Bioscience at the 2023 CJD Conference, Melbourne Australia.
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.
Via their social media channels:
LinkedIn: Australian Government Department of Health and Aged Care’s Post
X:
? Sunday is International Creutzfeldt-Jakob disease Awareness Day – #CJD is a rare & serious disease causing the brain to degenerate, leading to dementia & death. Did you know that globally most CJD occurs sporadically? ? https://t.co/X0NIR6rKAZ pic.twitter.com/bUuOV05aiF
— Australian Department of Health and Aged Care (@healthgovau) November 9, 2023
Raising money for the CJDSGN who support families & friends of patients suffering with CJD and other prion disease and those at increased risk of developing CJD in Australia.
Proceeds from ticket sales, raffles & auction items will be donated to the CJDSGN to support a research grant.
To donate in memory of Frances ‘Fluffy’ Cleal, click here.
To purchase a ticket for the Fluffy Charity Ball, click here.
