The Generative Brain

PROSPECT (NCT07732608): registry and natural history for people at risk

PROSPECT is a US registry and natural history study at Case Western and University Hospitals Cleveland for people at genetic risk of prion disease, run remotely, with free genetic counseling and saliva testing planned for at-risk people who may choose not to learn their result. The registry lists it as recruiting while the NPDPSC list says not recruiting.

Status as of 2026-10-16. Please check the study registry for the latest position.

Key facts

  • Contact route: central contacts at University Hospitals Cleveland and the NPDPSC are listed on the registry record (names and numbers are not stored here); data sharing is set to no.
  • Registry NCT07732608 lists one site (University Hospitals Cleveland Medical Center) as recruiting, with principal investigator Brian Appleby and individual participant data sharing set to no.
  • Eligibility: known PRNP mutation carriers and at-risk people, defined as a first-degree relative of a known carrier or a first-degree relative with two or more family members who died of prion disease and unknown genetic status.
  • Planned testing arm: free remote genetic counseling by a professionally trained genetic counselor and a free saliva test; participants can choose whether to receive results; counseling by telehealth providers licensed in all 50 states, which points to US participation.
  • Aims: prospective data on the earliest detectable changes and on survival of at-risk people by mutation and age; natural history data to support a registry; removing barriers to testing to help future trials fill.
  • Status conflict: the CJD Foundation and the registry site listing say open, while the NPDPSC studies list shows PROSPECT as not recruiting for US sites.
  • Background paper by Lian, Appleby, Minikel, Vallabh and colleagues (medRxiv 2025) on mortality of people with antemortem PRNP testing in the US, 1998 to 2024.
  • Sister program TAPCJD offers teleneurology assessment of CJD patients and is recruiting at the same site.

Timeline

  1. 2017Teleneurology program (TAPCJD) launches at the same center.
  2. 2025Background mortality preprint posted.
  3. 2026Presented at the CJD Foundation conference.
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