Report from the Prion Surveillance Study, May 2019

The annual report from the Prion Surveillance Study has been published.  

The Prion Surveillance Study has been running for over 10 years since it began in 2006. The Prion Surveillance study aims to find out whether there is evidence of the abnormal prion protein that is associated with variant Creutzfeldt Jakob Disease (vCJD) in the blood and body tissues of primary immunodeficiency patients exposed to UK sourced immunoglobulin between 1996 and 2000. Variant Creutzfeldt-Jakob Disease (vCJD) is a very rare disease that causes degeneration of nerve cells in the brain and spinal cord. At the time of writing a total of 178 cases of vCJD have been reported in the UK. 

Approximately 175 primary immunodeficiency patients are thought to have been exposed to UK-sourced immunoglobulin between 1996 and 2000. Of these, 79 from 16 Immunology centres across Britain have been involved in the study.
There is currently no blood test that can reliably tell us if someone is infected with vCJD before they develop symptoms of disease. All study participants have agreed to donate blood for storage for future testing when such a test becomes available.
To date, there has been no evidence of prion infection in the tissues tested and no patients have shown symptoms of prion disease. These results are reassuring but it is very important that we continue to monitor patients over the long term as we know that prion disease may take many years to develop. 

If you would like to find out more, please contact our study research nurse, Mrs Kudzai Karekwaivanane, and we will be happy to help.
Mrs Kudzai Karekwaivanane (Research Nurse)       

Telephone: 0131 537 2128 / 07464 677118

Posted November 2019