The Generative Brain

National Reference Center for TSE and CJD Surveillance, University Medical Center Goettingen (with DZNE Goettingen)

This is Germany's official national reference center for human prion diseases. It grew out of a CJD surveillance unit set up in 1993 at the University Medical Center Goettingen and was named the National Reference Center in 2006. It classifies notified cases, advises clinicians on diagnosis and hygiene, runs the reference CSF laboratory including RT-QuIC, and investigates possible clusters with public health services. It is led by Inga Zerr and linked to the German Center for Neurodegenerative Diseases. Public information only.

Key facts

  • Origin and status: centralized assessment of suspected human prion disease in Germany started in June 1993 under the CJD Surveillance Unit at the University Medical Center Goettingen; since January 2006 health authorities charged the center with CJD surveillance and named it National Reference Center for Human TSE (NRZ-TSE).
  • Function: notification of sCJD is required in Germany and clinics are advised to contact the center for classification; it advises physicians on differential diagnosis and hygiene and records clinical data.
  • Laboratory role: all CSF 14-3-3 and CSF RT-QuIC analyses in Germany are performed in its reference laboratory, and it cooperates with the neuropathology reference centres.
  • Leadership: Inga Zerr is described as head of the National Reference Center and of the prion research group (undated profile) and is affiliated with the German Center for Neurodegenerative Diseases in Goettingen; Peter Hermann is a study physician at the center.
  • Case volume and mix (to 2016): of 4,645 suspected cases reported from June 1993 to December 2016, 2,754 were classified probable or definite sporadic CJD, 197 genetic prion disease and 12 iatrogenic CJD; 1,188 were non-CJD.
  • Incidence: recorded sporadic CJD incidence in Germany is stable at about 2 per million inhabitants per year.
  • Funding signal: the 2020 physician study was funded by the Robert Koch Institute through the Federal Ministry of Health; no current funding statement was read.
  • Recent activity: in August 2025 the center, with public health services and the Robert Koch Institute, reported the investigation of an unusual sCJD cluster in three districts of the Greater Stuttgart area detected in early 2025; the outcome was not read.
  • International role: authors from the center sit on the international consensus on CJD biomarkers and criteria in which RT-QuIC was accepted into diagnostic criteria.
  • What it offers and does not: national classification, diagnostics and clinician advice, and research on diagnosis; the pages read do not describe patient-facing services or direct genetic testing, so none is asserted.

Timeline

  1. 1993Centralized assessment of suspected prion disease begins at Goettingen.
  2. 2006Named National Reference Center for Human TSE by health authorities.
  3. 2020Emerging Infectious Diseases paper on physicians among sCJD cases in Germany, 1993 to 2018.
  4. 2025Epidemiologisches Bulletin article on a possible CJD cluster near Stuttgart (cluster detected early 2025).
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