On 21st February 2025, Peter Dowd MP – chair of the All Party Parliamentary Group (APPG) for Rare, Genetic and Undiagnosed Conditions – kindly tabled questions to the Department of Health and Social Care on behalf of the CJD Community, after meeting with our volunteer Alice at the Inaugural Meeting of the APPG back in December (read Alice’s account of the meeting HERE). We are hugely grateful to Peter Dowd MP for tabling the questions, and for Ashley Dalton MP and Stephen Kinnock MP for responding on 3rd and 5th March 2025.
Below are the questions that were tabled, the responses, and an initial comment from our coordinator, Beth. Click HERE to read the questions and responses on the UK Parliament website:
Question from Peter Dowd MP: To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) support research into Creutzfeldt Jakob Disease and (b) ensure that UK research does not fall behind well-funded programmes in other countries.
Response from Ashley Dalton MP: 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.
Question from Peter Dowd MP: To ask the Secretary of State for Health and Social Care, what collaboration there is between NHS England, the National Institute for Health and Care Research and the Medical Research Council on Creutzfeldt–Jakob disease funding; and what assessment he has made of the potential impact of withdrawal of funding on (a) Creutzfeldt–Jakob disease and (b) prion disease research by those bodies.
Response from Ashley Dalton MP: 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
Question from Peter Dowd MP: To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that there are an adequate number of health professionals trained in (a) identifying and (b) supporting people affected by Creutzfeldt-Jakob disease (CJD).
Response from Ashley Dalton MP: 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.
Question from Peter Dowd MP: To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help support advances in CJD treatment.
Response from Stephen Kinnock MP: 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.
As a representative of the CJD and prion disease community, I appreciate that the Department of Health and Social Care is open to receiving proposals and funding projects. However, despite investments, there is still no approved treatment for Creutzfeldt-Jakob Disease (CJD). I hope that we can encourage DHSC to maintain communication with the Medical Research Council Prion Unit and other stakeholders to ensure ongoing support and progress for our community.
A collaborative approach is essential for effective diagnostic services for CJD and prion diseases, which are critical for those affected. I hope that we can also urge DHSC to ensure that any changes in funding do not negatively impact what is already a complex and challenging diagnostic process.
Additionally, as a Charity we will continue to engage with the broader rare disease community, advocating for greater awareness among medical professionals and encouraging them to consider rare diseases in their diagnoses.
