Prion disease policy rests on surveillance. In the United States the National Prion Disease Pathology Surveillance Center coordinates autopsy and neuropathology examination of suspected cases, tracks referrals and confirmed cases, and publishes annual national data. It is supported by the CDC. Other countries run their own units, and their rules on reporting, autopsy and sample sharing differ.
Policy has to work with gaps in testing. In a 2021 assessment, the European Centre for Disease Prevention and Control said the lack of a reliable diagnostic blood test for variant CJD makes the residual risk from UK-sourced blood and plasma products hard to judge, and with limited confidence. For companies and regulators this affects decisions on donor deferral, plasma sourcing and data use. The pages that follow cover surveillance systems, data protection and evidence for regulators. Related pages are the partners hub, AI partners and pharma and biotech.
Explore
- Genetic data and privacy rulesHow genetic data is classified under EU law, what surveillance and registry practice looks like in prion disease, and the privacy problem rarity creates.
- Evidence status for regulatorsWhat a regulator can verify today about prion disease therapeutics: two registry records, one controlled comparison, and a largely unpublished preclinical base.
- National surveillance systemsHow CJD and prion disease are monitored in Europe and the United States, with examples of differing reporting rules, for policy readers.