cjd deaths up year on year !

CJD Statistics

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CJD Figures

These figures show the number of suspect cases referred to the NCJDRSU in Edinburgh, and the number of deaths of definite and probable cases in the UK, from 1 January 1990 up to 5th September 2011

REFERRALS OF SUSPECT CJD		DEATHS OF DEFINITE AND PROBABLE CJD
Year	Referrals	Year	Sporadic	Iatrogenic	Familial	GSS	vCJD	Total Deaths
1990	[53]	1990	28	5	0	0	-	33
1991	75	1991	32	1	3	0	-	36
1992	96	1992	45	2	5	1	-	53
1993	79	1993	36	4	5	2	-	47
1994	119	1994	54	1	5	3	-	63
1995	87	1995	35	4	2	3	3	47
1996	133	1996	40	4	2	4	10	60
1997	163	1997	60	6	4	2	10	82
1998	155	1998	64	3	3	2	18	90
1999	170	1999	62	6	2	0	15	85
2000	178	2000	50	1	2	1	28	82
2001	179	2001	58	4	4	2	20	88
2002	163	2002	72	0	4	1	17	94
2003	162	2003	79	5	4	2	18	108
2004	114	2004	50	2	4	2	9	67
2005	124	2005	67	4	8	5	5	89
2006	112	2006	69	1	6	3	5	84
2007	119	2007	64	2	9	1	5	81
2008	150	2008	88	5	2	3	1	99
2009	153	2009	78	2	3	5	3	91
2010	149	2010	84	3	6	1	3	97
2011*	108	2011	49	2	6	1	2	60
Total Referrals	2841	Total Deaths	1264	67	89	44	172	1636

*As at 5th September 2011

Summary of vCJD cases

Deaths Deaths from definite vCJD (confirmed): Deaths from probable vCJD (without neuropathological confirmation): Number of deaths from definite or probable vCJD:	119 53 172
Alive Number of definite/probable vCJD cases still alive:	3
Total number of definite or probable vCJD cases (dead and alive):	175

(Table updated 9th September 2011)

The National Creutzfeldt-Jakob Disease Research & Surveillance Unit (NCJDRSU)

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The incidence of Creutzfeldt-Jakob disease (CJD) is monitored in the UK by the National CJD Research & Surveillance Unit (NCJDRSU) based at the Western General Hospital in Edinburgh, Scotland. The Unit brings together a team of clinical neurologists, neuropathologists and scientists specialising in the investigation of this disease. This document is intended to summarise the research in progress at the NCJDRSU and also provide some background information about CJD and other human spongiform encephalopathies. We have also provided some links to other resources and contrary points of view available on the Web.

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Creutzfeldt-Jakob Disease Surveillance.

• Figures for the number of CJD cases and referrals of suspected cases of CJD to the NCJDRSU since 1990.
• NCJDRSU protocol for CJD surveillance across the UK.
• National Referral System. From July 2004, a new national reporting system was announced by the Chief Medical Officer. This is centred on the National CJD Reporting Form to be faxed, by the notifying clinician, to the National Creutzfeldt-Jakob Disease Research & Surveillance Unit (NCJDRSU), the National Prion Clinic (NPC) and the local CCDC.
• Interim guidance on incidents involving inherited prion disease - this document sets out how inherited prion disease incidents should be reported to the CJD Incidents Panel and complements the guidance on local reporting by clinicians of CJD cases to public health departments (above).
• Text and figures of the latest annual report of the NCJDRSU covering the period 1990-2009 (published 11th March 2011).
• Archive of previous NCJDRSU annual reports (1992-2008).
• National CJD Research & Surveillance Unit Scientific Report 2007/08 (published 13th November 2008).
• Reporting CJD cases to public health departments - Guidance Document. - (updated November 2006)
• Potential treatments for Creutzfeldt-Jakob disease (updated July 2006).

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Information on variant CJD.

• Reproduction of the complete Lancet article published by the NCJDRSU in April 1996.
• Text of a letter written by Dr Robert Will to every Neurologist in the UK. This letter describes in some detail the clinical and pathological variants observed between sporadic CJD and the new variant of the disease which has been identified here at the NCJDRSU.
• The original statement issued by SEAC, the government's advisory committee on spongiform encephalopathies, about these ten cases of the new variant of CJD.
• Protocol for the investigation of geographically associated cases of variant CJD
• Incidence of variant Creutzfeldt-Jakob disease diagnoses and deaths in the UK compiled by N J Andrews at the Statistics Unit, Centre for Infections, Health Protection Agency.(updated 18th May 2011)
• Figures for the number of vCJD cases worldwide [data courtesy of the European and Allied Countries Study Group of CJD (EUROCJD/NEUROCJD)]

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Care and Support.

• Reproduction of report entitled Patients with new variant Creutzfeldt-Jakob disease and their families: care and information needs by Dr Margaret Douglas, Dr Harry Campbell and Professor Robert Will.
• About the National Care-Cordinators (updated December 2004).
• CJD Support Network. The CJD Support Network was set up in Autumn 1995 by relatives of people who have died of CJD with backing from the Alzheimer's Disease Society. Since 2003 the CJD Support Network became an independent charity and offers practical and emotional support to families and professionals affected by all strains of CJD.

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Practical information about CJD.

• The different types of CJD are described.
• The clinical aspects of this disorder are described. (updated July 2003)
• Possible investigations undertaken in cases of CJD are described here. (Updated 15/10/02)
• The neuropathology of CJD as observed in the CJD surveillance unit laboratory.
• The National CJD Surveillance Unit Brain Bank
• A Glossary of medical and scientific terms relevant to CJD.

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Creutzfeldt-Jakob Disease research.

.....SECTION UNDER DEVELOPMENT .........

• Complete reference list of scientific research articles produced by the NCJDRSU since 1990.

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Other links

• The European and Allied Countries Collaborative Study Group of CJD (EUROCJD/NEUROCJD). Information and results.
• Transfusion Medicine Epidemiology Review (TMER). Collaborative project between the UK NCJDRSU and the NHS Blood and Transplant. Information and results from this project whose main purpose is to investigate whether there is any evidence that CJD or vCJD may have been transmitted via the blood supply. (updated May 2009)

• NEUROPRION is a network of excellence funded by the European Union via the 6th Framework programme in the priority 5 "Food Quality and Safety".

• Scottish TSE Network The aim of the STN is to provide a forum for the exchange of ideas, results, reagents and expertise in research, diagnosis and clinical studies of TSE diseases in Scotland.
• Transfusion Guidelines Joint UKBTS/NIBSC Professional Advisory Committee Position Statement (Creutzfeldt-Jakob disease) prepared by the vCJD Working Party of the Standing Advisory Committee on Transfusion Transmitted Infections.
• Transmissible Spongiform Encephalopathy Agents: Safe Working and the Prevention of Infection. Guidance from the Advisory Committe on Dangerous Pathogens and the Spongiform Encephalopathy Advisory Committee. (updated June 2003 - updates and revisions since June 2003 are clearly indicated in the document index)
• Department of Health CJD Policy Unit
• CJD Incidents Panel containing information about the Panel and relevant documents and links, including the new framework document and the surgical incident reporting form.
• vCJD Trust - website set up by Charles Russell Solicitors containing information on the Compensation Scheme and how to claim
• The Association of British Neurologists
• The National Prion Clinic at the National Hospital for Neurology and Neurosurgery, Queen Square, London.
• PRION-1 trial this website provides details of a randomised trial of quinacrine in human prion disease. Further details can be found here.
• MRC New Therapies Scrutiny Group for Prion Disease (NTSG) provides an independent source of advice on research into the development of potential therapeutics or preventative agents for prion disease.
• Food Standards Agency is a new government department set up in April 2000 to protect people's health and the interests of consumers in relation to food.
• The European Food Safety Authority (EFSA) has been delivering risk assessments and scientific opinions on BSE/TSE since 2003. Information on BSE/TSE can chiefly be found in the subsections under the headings BIOHAZ Panel and TSE Assessments.
• TSE Resource Centre. The TSE Resource Centre, directly supported by the BBSRC and MRC, was established in 1999 to collect, store, characterise, produce and distribute a range of reagents, from monoclonal antibodies to teaching aids.
• CJD Resource Centre provides standard reagents to researchers working on CJD.
• CJD Alliance is an independently run organisation involved in TSE's such as CJD - its key interests are in early diagnosis and treatment issues.
• USA - American CJD Foundation The Foundation seeks to promote the research, education and awareness of CJD, as well as to reach out to people who have lost loved ones to this illness.
• Information on CJD and BSE in the USA - Centers for Disease Control and Prevention, Atlanta, Georgia
• USA - National Prion Disease Pathology Surveillance Center (from the Division of Neuropathology, Case Western Reserve University. CJD surveillance system in collaboration with CDC).
• USA - CDC's website on infection control and TSEs
• USA - FDA website describing the ruminant feed ban introduced in the US as a result of the BSE outbreak in Europe.
• Information on BSE and CJD provided by the British Medical Journal.
• The World Health Organisation have provided information on BSE and the possible risks to humans.
• Research Report on Transmissible Spongiform Encephalopathies from the Biotechnology and Biological Sciences Research Council.
• Position statement on BSE from the Institute of Food Science & Technology.
• The Yahoo Index for CJD information on the WWW.

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About ourselves

• The people involved in the research being undertaken at the CJD unit.
• The setup, details of the funding of the CJD and the collaborative projects we are involved in.
• Our address should you wish further contact.

For enquiries contact: