Key facts
- Director of the NPDPSC and Associate Professor of Neurology, Psychiatry and Pathology at Case Western Reserve University School of Medicine, with clinical affiliation at University Hospitals Cleveland Medical Center.
- Principal investigator of PROSPECT (NCT07732608), a registry for people at genetic risk of prion disease, listed as recruiting at University Hospitals Cleveland with data sharing set to no.
- Principal investigator of the Teleneurology Assessment Program for CJD (TAPCJD, NCT07840547), recruiting at one site with data sharing set to yes.
- TAPCJD launched in April 2017 to reach patients who live far from specialists; in the feasibility study 95 percent chose teleneurology and 88 percent took part from home.
- Co-author of papers on the MRC Prion Disease Rating Scale (2025), caregiver burden in prion disease (2025) and mortality of people with antemortem PRNP testing in the US 1998 to 2024 (medRxiv 2025, with Minikel and Vallabh).
- Presented at the CJD Foundation's 2026 conference on PROSPECT, genetic prion disease, TAPCJD and why there is reason to be more hopeful about the field.
- PROSPECT offers free remote genetic counseling and free saliva testing to people at risk who may choose whether to receive their result.
Timeline
- 2017Launches the teleneurology program with University Hospitals.
- 2019Teleneurology feasibility paper published.
- 2025Co-authors the MRC Prion Disease Rating Scale responsiveness paper.
- 2025Co-authors a medRxiv preprint on mortality after antemortem PRNP testing.
- 2026Presents PROSPECT, TAPCJD and field updates at the CJD Foundation conference.
Projects and trials
Research papers
Works with
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Last checked 16 October 2026
Sources for this page
- CJD Foundation family conference 2026 presentations
- University Hospitals: Casting a wider net (teleneurology program, January 2018)
- ClinicalTrials.gov NCT07732608: PROSPECT registry record
- ClinicalTrials.gov NCT07840547: Teleneurology Assessment Program for CJD
- Teleneurology for research and surveillance of CJD (Case Western abstract)
- CJD Foundation: PROSPECT study for people at genetic risk of prion disease