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Research

Where the science stands.

A curated, sourced view of current research in prion disease. Plain explanations first. Technical detail on request. Nothing here is a treatment recommendation, and nothing here implies eligibility for any study.

Research directions

One of the most active ideas in the field is simple to state: reduce the amount of normal prion protein, so there is less raw material for the disease process. Several approaches pursue it.

01

Lowering the normal prion protein

The disease process depends on the body's own prion protein (PrP). Several strategies ask a simple question: if there is less normal PrP available, can the disease slow down?

For professionals

PrP is encoded by PRNP. Genetic evidence in animals shows that reducing PrP expression extends survival after prion infection, and heterozygous loss-of-function variants in humans appear tolerated. PrP-lowering is being pursued with RNA-targeting modalities delivered to the CNS.

02

siRNA

Small interfering RNA is a type of molecule that tells cells to make less of a specific protein. A PrP-targeting siRNA is now in a first-in-human safety study.

For professionals

Chemically modified, divalent siRNA designs have been developed for durable PrP knockdown in the CNS after intrathecal administration. The PRiSM study (NCT07444580) evaluates safety, tolerability, PK and PD in symptomatic adults.

03

Antisense oligonucleotides

Antisense oligonucleotides (ASOs) are another way to reduce production of a protein. They have been studied for prion disease in laboratory models and in early clinical work.

For professionals

PRNP-targeting ASOs extend survival in prion-infected mice, including when dosed after symptom onset. Human evaluation has been limited. Consult current literature and registries for the state of clinical development.

04

Biomarkers and diagnosis

Tests that detect the disease earlier and track how it changes over time. Better markers help doctors diagnose sooner and help trials measure whether a treatment is doing anything.

For professionals

RT-QuIC on CSF and other samples, total tau, neurofilament light chain, 14-3-3 and MRI (DWI/FLAIR patterns) support diagnosis. CSF PrP concentration is used as a target-engagement marker for PrP-lowering approaches.

05

Monitoring progression

Because CJD moves fast, research teams work on ways to measure decline precisely. This matters for patients, for families planning care, and for evaluating any experimental intervention.

For professionals

Clinical scales, serial fluid biomarkers and imaging are used to quantify progression. Natural history data in sporadic CJD is essential context for interpreting single-arm or small early-phase studies.

Verified clinical trial records

Trial status changes. We never hardcode recruitment status as a permanent fact. Every record shows when a human last verified it and links directly to the official registry.

Listing a trial is not a statement that Lito is eligible, has been accepted, or will receive any experimental treatment. It is not a statement that the treatment works.

Phase 1 · NCT07444580

PRiSM. PrP-targeting siRNA Safety & Mechanism Study

First-in-human Phase 1 study evaluating the safety, tolerability, pharmacokinetics and pharmacodynamic effects of a PrP-targeting siRNA in adults with symptomatic prion disease.

Sponsor
Broad Institute of MIT and Harvard
Planned participants
approximately 30
Listed locations
  • Massachusetts General Hospital
  • Mayo Clinic
  • Columbia University Medical Center
  • University Hospitals Cleveland Medical Center
  • Vanderbilt University Medical Center

Status

Check official registry

Last verified: August 23, 2026

Public information about availability has been inconsistent. The registry record has shown a recruiting status, while recent reporting about Lito's case indicated that admissions may be temporarily unavailable, with additional admissions expected later. Check the official record.

View official study record

Search ClinicalTrials.gov for prion disease studies(opens in a new tab)

Where research is happening

Organizations and institutions involved in prion disease research, diagnosis, patient support or clinical investigation. Every entry links to an official website. No endorsement or partnership is implied.

  • Research · Clinical trials

    Broad Institute of MIT and Harvard

    Cambridge, MA, United States

    Biomedical research institute. Sponsor of the PRiSM first-in-human study of a PrP-targeting siRNA in symptomatic prion disease.

    Official website Last verified August 23, 2026
  • Clinical trials · Diagnosis

    Massachusetts General Hospital

    Boston, MA, United States

    Academic medical center listed as a study location in the PRiSM registry record.

    Official website Last verified August 23, 2026
  • Clinical trials · Diagnosis

    Mayo Clinic

    Rochester, MN, United States

    Academic medical center with prion disease diagnostic expertise. Listed as a PRiSM study location.

    Official website Last verified August 23, 2026
  • Clinical trials · Research

    Columbia University Irving Medical Center

    New York, NY, United States

    Academic medical center listed as a PRiSM study location.

    Official website Last verified August 23, 2026
  • Clinical trials · Diagnosis

    University Hospitals Cleveland Medical Center

    Cleveland, OH, United States

    Academic medical center listed as a PRiSM study location, in the same city as the US national prion surveillance center.

    Official website Last verified August 23, 2026
  • Clinical trials

    Vanderbilt University Medical Center

    Nashville, TN, United States

    Academic medical center listed as a PRiSM study location.

    Official website Last verified August 23, 2026
  • Research · Diagnosis

    UCSF Memory and Aging Center

    San Francisco, CA, United States

    Clinical and research center for neurodegenerative disease, including a dedicated rapidly progressive dementia and prion disease program.

    Official website Last verified August 23, 2026
  • Diagnosis · Surveillance

    National Prion Disease Pathology Surveillance Center

    Cleveland, OH, United States

    US reference center for prion disease diagnostics and surveillance, based at Case Western Reserve University.

    Official website Last verified August 23, 2026
  • Patient support · Advocacy

    CJD Foundation

    United States

    Nonprofit supporting families affected by prion disease and funding research. Provides resources for patients, caregivers and clinicians.

    Official website Last verified August 23, 2026
  • Research · Advocacy

    Prion Alliance

    United States

    Nonprofit that funds and advocates for research toward treatments for human prion disease.

    Official website Last verified August 23, 2026

This section is built on a structured data model so it can be connected to a maintained research database later. If you notice an error, write to the official channel and mention "helplito.org".