Samples and data, free of charge
Blood, urine, saliva and cheek-swab samples with lifestyle questionnaires, collected repeatedly over years. Researchers pay nothing and share their results back.
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Creutzfeldt-Jakob disease research
Finding the earliest signs of CJD, together with the families who live with it
CJDbio follows patients, healthy carriers and their relatives over time, so researchers worldwide can see what changes in the body long before symptoms start.
700+families in direct contact with the foundation
355samples collected so far
500participants targeted for the cohort
E200Kthe genetic form studied, in one of the world's largest affected communities
Why this biobank
Rare disease, rare opportunity
CJD affects one or two people per million worldwide, so human studies are hard to recruit for. One community carries the genetic form at an unusually high rate, in a small area. That is what makes a long-term cohort possible.
Ten minutes that help the next generation
Relatives of people with genetic CJD can give samples close to home. Taking part never reveals carrier status, and you can withdraw at any time.
How to joinWhat CJD is and how it is diagnosed
A rare, fatal prion disease of the brain, in sporadic, genetic and acquired forms. Read about the genetics, the tests and the treatments in research.
Learn about CJD
Our approach
Follow people before the disease, not only after
Most CJD research starts once symptoms appear, when the brain is already badly damaged. By following healthy carriers and their relatives over many years, we look for the triggers, the early biomarkers and the protective factors that decide whether and when the disease starts.
- Longitudinal: samples taken again over the years, so changes can be measured over time.
- Coded and confidential: names are kept apart from medical data, which researchers only see under a number.
- Open to science: an independent committee of senior scientists approves sample requests from anywhere in the world.
- Built for big data: results from every study flow back, so each sample gains value for AI-driven discovery.