Families outside the United States often read about a trial and find that the next step is unclear. Two questions settle most of it: which countries the trial has sites in, and whether it is still enrolling.
Are any trials open in more than one country?
Yes. The PrProfile study of the drug ION717 listed sites in the United States, Australia, Canada, France, Germany, Israel, Italy, Japan and Spain. Its registry record was active and not recruiting in October 2026, which means it is no longer taking new participants.
The PRiSM study, which gives a single dose of a treatment designed to lower prion protein, lists sites in the United States only, at hospitals in Boston, Rochester, New York, Cleveland and Nashville. Its record showed it recruiting in October 2026. The sponsor’s statement to patient organisations says one dose per participant, no expanded access and United States sites only.
Both records state that expanded access is not offered. Expanded access means getting a drug outside a trial, and where it is not offered, joining the trial is the only route.
Trial details change, so current trials carries the sponsor-stated position with the date it was checked.
Can I travel to a trial site in another country?
That is a question for the trial site and your own neurologist, not something this page can answer. Trials set rules about who can take part, and those rules can include living close enough to attend visits, having a caregiver who can come, and being able to have procedures at set times.
The PRiSM record, for example, requires a caregiver for symptomatic participants and includes follow-up over 24 weeks. Whether travel is practical depends on those requirements and on the person’s health at the time.
How do I ask?
Through the treating team. A neurologist can contact a trial site, read the current rules and say whether it is worth pursuing. In the UK the National Prion Clinic and the surveillance unit in Edinburgh advise local teams, and in other countries the national surveillance centre plays the same role. Countries lists those services.
Support organisations can also say what is currently open. They cannot assess eligibility, and neither can we.
What if there is nothing to join?
That is the position for many families, and it is worth saying plainly rather than leaving as a gap. There is no approved treatment for prion disease anywhere, and care is aimed at symptoms and comfort. Care covers what helps.
Some studies are not treatment trials at all. Observational studies, registries and biomarker studies collect information, and some are open to people at genetic risk who have no symptoms. The PRiSM study includes an observational arm with no investigational drug. These are often easier to join from a distance, because the visits are fewer.
Where next
How trials work explains phases, placebo and consent. Treatment research explained covers what is being developed and how far along it is. Understand and care is the hub.
Nothing here is advice about whether a trial is right for anyone. That decision belongs with the person, their family and their doctors.