PRION-1: Quinacrine for Human Prion Disease (NCT00104663) | Clinical Trial Compass
CompletedNot Applicable
PRION-1: Quinacrine for Human Prion Disease
United Kingdom160 participantsStarted 2004-06
Plain-language summary
PRION-1 aims to assess the activity and safety of Quinacrine (Mepacrine hydrochloride) in human prion disease. It also aims to establish an appropriate framework for the clinical assessment of therapeutic options for human prion disease that can be refined or expanded in the future, as new agents become available.
Who can participate
Age range
12 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Aged 12 years or more, diagnosed with any type of human prion disease.
Exclusion Criteria:
* In a coma, or in a pre-terminal phase of disease such that prolongation of the current quality of life would not be supported
* Known sensitivity to quinacrine
* Been taking any other putative anti-prion therapy for less than 8 weeks
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this quinacrine trial has already been completed, has my doctor seen the published results, and do those results suggest any real benefit in slowing the disease or extending survival compared to no treatment?
2This trial measured 'time to death' and whether patients showed improvement or at least no worsening across three neurological and neuropsychiatric measures — based on those specific outcomes, what did the data actually show, and does it change whether quinacrine is worth considering in my situation?
3Because this was listed as Phase NA rather than a standard Phase 1, 2, or 3 trial, what does that mean for how confident my doctor is about quinacrine's safety and effectiveness for prion disease?
4Are there any standard-of-care treatments or newer studies my doctor would recommend exploring before or instead of pursuing quinacrine, given that this trial is now complete and the results are available?
5Prion disease can progress very quickly — given what this trial found about time to death, how would my doctor weigh the potential risks of quinacrine against how much time we realistically have to try it?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Time to death
2
proportion of responders, with "responders" defined as patients showing either clinical improvement or lack of deterioration in 3 key neurological and neuropsychiatric measures