The Department commissions research through the National Institute for Health and Care Research (NIHR) and invests over £1.8 billion a year on applied health and care research. The NIHR welcomes funding applications for research into any aspect of human health including Creutzfeldt-Jakob disease (CJD) and clinical trials for therapeutics. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

Since 2002, the NIHR has made available over £43 million of funding for research to address key evidence gaps on variant CJD including the development of a treatment for variant CJD, a diagnostic test for sub-clinical variant CJD, and decontamination of surgical instruments.

Recognising the devasting impact of CJD on patients and their loved ones as well as the current lack of a treatment, Department officials met with the Director of the Medical Research Council’s Prion Unit in October 2024 to discuss possible clinical trials for a candidate therapeutic, namely prion protein monoclonal antibody therapy, for CJD. The researchers were advised to explore the NIHR Efficacy and Mechanism Evaluation programme as a route of funding.

The National Health Service in England employs a stratified approach, combining extended autoclaving, enhanced washing, prion specific chemicals, and the destruction of high-risk instruments. The Health Technical Memorandum 01-01: Management and decontamination of surgical instruments (medical devices) used in acute care, published in 2013 and owned by the Department, outlines the decontamination practices and the various ways to sterilise reusable medical devices used in acute care in England. This technical memorandum is available at the following link:

https://www.england.nhs.uk/publication/decontamination-of-surgical-instruments-htm-01-01/

The Advisory Committee for Dangerous Pathogens (ACDP) issued new guidance to the NHS in April 1998 in response to the variant Creutzfeldt-Jakob disease (vCJD) outbreak, to improve decontamination practices. Its guidance is reviewed and updated to ensure it remains accurate, effective, and compliant with current scientific evidence, and was last updated in November 2021. The ACDP’s guidance is available at the following link:

https://www.gov.uk/government/publications/guidance-from-the-acdp-tse-risk-management-subgroup-formerly-tse-working-group

Since decontamination measures were put in place, there have been no confirmed cases of vCJD via surgical instruments in England.

In his 2022 Compensation Framework Study, Sir Robert Francis recommended that variant Creutzfeldt-Jakob Disease (vCJD) was not included in the Infected Blood Compensation Scheme. He noted that “this is a rare disease for which there is a separate compensation scheme. It is unlikely, therefore, that a separate category is justified in this scheme. However, many of the infected have been warned there is a risk of their having vCJD. Assuming that risk, insofar as it exists, is shared by all who have received blood or blood products in the relevant period, there is no special case for taking it into account in this scheme."

Chapter 5 of the Infected Blood Inquiry’s May 2024 Report examines the Government response to vCJD.

The Department funds research through the National Institute of Health and Care Research (NIHR). Since 2002, the Department has made available over £43 million of funding for research and surveillance of Creutzfeldt-Jakob Disease (CJD) and prion diseases including into the treatment and testing for CJD and mitigation strategies to reduce the risk of secondary transmission of the disease.

The NIHR welcomes research proposals on all aspects of human health including CJD and prion disease. Research applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality.

Effective diagnostic and surveillance services for Creutzfeldt-Jakob disease (CJD) are necessary to monitor public health protection measures and ensure that patients receive appropriate care and support.

Currently, specialist diagnostic and surveillance services are provided by the National CJD Research and Surveillance Unit. From April 2025, funding for diagnostic and clinical services is transferring from the National Institute for Health and Care Research to NHS England. This includes funding for specialist testing, neuropathology services, and clinical support.

Also from April 2025, the lead for CJD surveillance in England will be the UK Health Security Agency. CJD will be added to schedule 1 of the Health Protection (Notification) (Amendment) Regulations 2025. Subject to Parliamentary clearance, CJD notification in England will become a statutory duty from 6 April 2025.

Creutzfeldt-Jakob disease (CJD) is a very rare but rapidly progressive and fatal disease. Effective diagnostic and care services are important in ensuring that patients and their families get the support that they need. Unfortunately, there is no known cure for CJD. Treatment options focus on symptom control and palliative care.

Specialist diagnostic services are provided by the National CJD Research and Surveillance Unit. From April 2025, funding for these services is being transferred from the National Institute for Health and Care Research to NHS England.

The Department funds research through the National Institute of Health and Care Research (NIHR). Since 2002, the Department has made over £43 million of funding available for research and surveillance of Creutzfeldt-Jakob disease (CJD) and prion diseases.

The Department is working closely with NHS England on future funding for CJD diagnostic services. The Department also works closely with the Medical Research Council (MRC) to align funding for priority research, and has met specifically with the MRC Prion Unit recently.

Both the NIHR and the MRC welcome research proposals on all aspects of human health, including CJD and prion disease. Research applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality

The Department funds research through the National Institute of Health and Care Research (NIHR). Since 2002, the Department has made over £43 million of funding available for research and surveillance of Creutzfeldt-Jakob disease (CJD) and prion diseases.

The Department is working closely with NHS England on future funding for CJD diagnostic services. The Department also works closely with the Medical Research Council (MRC) to align funding for priority research, and has met specifically with the MRC Prion Unit recently.

Both the NIHR and the MRC welcome research proposals on all aspects of human health, including CJD and prion disease. Research applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

Creutzfeldt-Jakob disease (CJD) is a rapidly progressing neurodegenerative disease. As of yet, there is no cure. Treatment options focus on symptom control and palliative care.

The Department, via the National Institute for Health and Care Research, funds world-leading research to improve people’s health and wellbeing. The Department welcomes applications from specialist centres, and others, to explore advances in CJD treatment.

Clinical diagnostic testing for variant Creutzfeldt-Jakob Disease (vCJD) is provided by the National Health Service, but there is currently no licensed blood screening test for vCJD, although there is ongoing research in this field. The National CJD Research and Surveillance Unit is involved in developing specialist investigations for vCJD, in collaboration with colleagues in Europe and internationally, with further information available at the following link:

https://www.cjd.ed.ac.uk/surveillance/diagnosis-and-testing

UK legislation on Animal By-Products (ABPs) bans the feeding of all farmed animals with catering waste. This ban was introduced following the foot and mouth disease (FMD) outbreak in the UK in 2001, which is thought to have originated from the illegal feeding of pigs with untreated food waste. The outbreak resulted in the destruction of more than 10 million cattle and sheep and cost the UK economy billions of pounds.

Defra has undertaken studies which show that it might be possible for a range of food waste to be safely fed to livestock but that this is dependent on proper segregation of animal by-products from other material, meaning non-segregated material is an unacceptable disease risk. It is doubtful whether it would be economically viable for potential operators to comply with the controls we would consider necessary for the use of catering waste in feed for pigs.

The UK government has committed to working towards sending zero food waste to landfill by 2030 through its Clean Growth Strategy and Waste and Resources Strategy for England, published in 2018 - http://www.gov.uk/government/publications/resources-and-waste-strategy-for-england. The Environment Bill requires that food waste must be collected from households at least weekly. It should be sent for recycling or composting, ideally through anaerobic digestion which generates energy and produces fertiliser digestate. We will continue to discuss with industries and other stakeholders how we reduce waste and maximise recycling.

Creutzfeldt-Jakob Disease belongs in the family of fatal brain diseases, Transmissible Spongiform Encephalopathies (TSEs). The family also includes BSE in cattle, scrapie in sheep and goats and Chronic Wasting Disease (CWD) in deer. Scientific research indicates that new variant (nv) CJD is contracted via the consumption of products from cattle infected with BSE, the only TSE known to be transmissible to humans. There is no evidence that pigs and poultry can be affected by TSEs.

Legislation for the prevention and eradication of TSEs prohibits the feeding of protein of animal origin to farmed animals, with a few exceptions (e.g. milk). This is to prevent the transmission of TSEs through feeding. Processed animal protein (PAP) made from pig or poultry material is currently used as fertiliser or is exported but is not sent to landfill.