Observational studies record how disease develops, how tests behave and what care people receive. They give researchers the natural history that future trials need as a comparison. Taking part does not involve a study drug. The entries below describe individual studies, and trials covers interventional research.
The National Prion Monitoring Cohort is a UK study of patients seen at the National Prion Clinic, linked to the MRC Prion Unit. A 2022 paper describes it as a longitudinal prospective study that enrolled patients referred to the clinic between October 2008 and November 2020. Rapidly progressive patients are seen every 4 to 8 weeks and slowly progressive inherited disease every 6 to 12 months. Other studies are linked from this page, with entry rules set by each study team.
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- Brief group Acceptance and Commitment Therapy for people at risk of inherited prion disease (National Prion Clinic feasibility study, CJD Support Network grant 2023)A UK study that tested whether a short group course of Acceptance and Commitment Therapy (ACT), a talking therapy that teaches people to live alongsid
- APRI funded CWD transmission study in cynomolgus macaques (Lethbridge, Calgary and German Primate Center)This is a long running animal experiment that asked whether chronic wasting disease (CWD), the prion disease of deer and elk, can pass to primates, as a proxy for risk to people.
- Emerging CWD, chronic wasting disease prions from Norwegian cervids (Research Council of Norway 334585, 2023 to 2029)Emerging CWD is a six year research project, 1 October 2023 to 30 September 2029, led by the Norwegian Veterinary Institute at Ås and funded by the Re
- AGL2017-88353-P, bioassay of Spanish sporadic CJD and VPSPr cases in ovine and caprine PrP transgenic mice (IRTA-CReSA)AGL2017-88353-P is a Spanish state funded project announced by IRTA on 15 January 2018 under the title "Study of a possible causal relationship betwee
- Natural history study of preclinical genetic CJD, Tel Aviv (NCT05746715)A single-site natural history study at Tel Aviv Medical Center of E200K genetic CJD patients and their first-degree healthy relatives, carriers and non-carriers.
- National Prion Monitoring Cohort (UK; IRAS 345370)UK National Prion Monitoring Cohort at the National Prion Clinic in London: a long-running cohort of patients with, or at high risk of, human prion di
- OBSERVE (NCT05124392): biomarkers in individuals at risk for prion diseaseMGH-based observational cohort of people at risk for genetic prion disease (known carriers, 50/50-risk relatives who may not know their status, and co
- ProFFIle (Predicting Fatal Familial Insomnia), JPND consortiumProFFIle is a three year European research consortium funded through the EU Joint Programme Neurodegenerative Disease Research (JPND) 2021 call.
- PROSPECT (NCT07732608): registry and natural history for people at riskPROSPECT is a US registry and natural history study at Case Western and University Hospitals Cleveland for people at genetic risk of prion disease, ru
- The Role of the Coagulation Pathway at the Synapse in Prion Diseases (Sheba Medical Center, NCT02480725)NCT02480725 is an observational study registered in June 2015 by Sheba Medical Center in Israel, with the Goettingen prion referral centre under Inga Zerr as collaborator.