RareTrial

Rare condition

Fatal familial insomnia

ORPHA:466 ↗Gene PRNP
Search all Fatal familial insomnia trialsAlert me when a trial opens

5

studies recruiting now

as of 7 Sept 2026

23

studies registered in total

as of 7 Sept 2026

4

countries with a recruiting site

as of 7 Sept 2026

19 Mar 2026

most recent study posted

among recruiting studies

Recruiting trials

Showing the 5 most recently updated recruiting studies, as recorded 7 Sept 2026. Live status on each study page.

Search all Fatal familial insomnia studies

Where recruiting studies are running

Countries with at least one recruiting site among the studies above, 7 Sept 2026. Tap a country to search trials there.

ChinaIsraelItalyUnited States

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Support

Patient organisations

We do not yet list a dedicated organisation for this condition. The directories below are the best route.

NORD ↗GARD ↗Orphanet ORPHA:466 ↗

About Fatal familial insomnia

RareTrial does not yet hold a plain-language description of this condition. The most reliable starting point is Orphanet’s expert page, which lists specialist centres, registries and patient organisations, and the gene involved (PRNP).

Orphanet expert page ↗GARD (NIH) ↗

Treatments being studied

1 in clinical development, from Open Targets (CC BY 4.0). Not medical advice.

Phase 2Doxycycline Hydrochloride

Related conditions

Sporadic fatal insomnia

Neuromuscular

Early-onset myopathy with fatal cardiomyopathy

Neuromuscular

Fatal congenital hypertrophic cardiomyopathy due to glycogen storage disease

Fatal infantile cytochrome C oxidase deficiency

Neurological

Fatal infantile encephalopathy-pulmonary hypertension syndrome

Neuromuscular

Fatal infantile hypertonic myofibrillar myopathy

Metabolic

Fatal infantile lactic acidosis with methylmalonic aciduria

Mitochondrial

Fatal mitochondrial disease due to combined oxidative phosphorylation defect type 3

Neurological

Fatal post-viral neurodegenerative disorder

Metabolic

Glycogen storage disease due to glycogen branching enzyme deficiency, fatal perinatal neuromuscular form

Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).