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Inquiry confirms second round of appointments of expert group members

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The Standing Advisory Committee on Transfusion Transmitted Infections proposed a study to check on recipients of those blood donors who later developed vCJD.

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The Lothian Research Ethics Committee refused the National Creutzfeldt-Jakob Disease Research and Surveillance Unit's application for renewed ethical approval of the Transfusion Medicine Epidemiology Review study.

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Professor Doyal wrote to Dr Hewitt of the National Blood Authority expressing his view that donors who were told their blood would not be used must be informed why that was, and that it would be illegal and immoral to allow someone to give blood when it was known that the donation would be destroyed.

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A letter sent by the Scottish Office to NHS Trust medical directors stated that they had been told by ethics experts and advisory bodies that there was no need to inform patients who had received nvCJD-implicated blood components or products.

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"The Lancet" published an article which included reference to a case where a patient who had received a donation of blood in 1996 from an infected donor subsequently died of vCJD.

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An NHS Blood and Transplant meeting discussed and agreed on various measures on the management of patients who received blood from donors who later developed vCJD.

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As part of risk management the Creutzfeldt-Jakob Disease Incidents Panel sought to balance the individual's "right to know" and "right not to know" about possible exposure to risk.

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Dr Winyard of the NHS Executive wrote to NHS Trust medical directors informing them that they had been told by ethics experts and advisory bodies that there was no need to inform patients of their exposure.

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In a letter from Dr Winyard of the NHS Executive to NHS Trust medical directors, he stated: "There may clearly be some circumstances where clinicians will decide to inform a particular patient of the reason for the product withdrawal...In such circumstances it is for the clinician to decide how best to respond".

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SEAC reported that the evidence favoured a conclusion that there was a link between BSE and vCJD, but this was not (yet) sufficient to be regarded as scientific proof of a causative link.

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The BSE Inquiry Report Volume 1 Findings and Conclusions reported that: "The impression thus given to the public that BSE was not transmissible to humans was a significant factor leading to the public feeling of betrayal when it was announced on 20 March 1996 that BSE was likely to have been transmitted to people."

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A letter from Dr Sinka of the Health Protection Agency to Dr Dolan stated that "individuals who only received plasma products between 1980 and 1989 should now have their treatment history re-assessed to confirm this fact and if it is confirmed, they should be de-notified" of being at an increased risk of vCJD.

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The CJD Incidents Panel's framework for the management of possible exposures to CJD through medical procedures drew particularly on the document "Det Norske Veritas Risk Assessment of Exposure to vCJD Infectivity in Blood and Blood Products for Department of Health".

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"Haemophilia" carried an article titled "Variant CJD infection in the spleen of a neurologically asymptomatic UK adult patient with haemophilia".

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In the First Annual Report of the Spongiform Encephalopathy Advisory Committee, SEAC considered the results of two studies in "Nature" and became convinced that the evidence of the link between BSE and vCJD had become "compelling".

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Within two years of the announcement that there was a probable link between BSE and vCJD, an inquiry was set up to "establish and review the history of the emergence and identification of BSE and new variant CJD in the United Kingdom".

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The Chief Medical Officer (England), on behalf of the CMOs of all four nations, set up the CJD Incidents Panel which was asked to develop a framework for the management of possible exposures to CJD through medical procedures which would then be subject to consultation with interested bodies and organisations.

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Dr Dolan wrote to United Kingdom Haemophilia Centres Doctors' Organisation colleagues informing them of the intended de-notification of patients only exposed to UK fractionated blood products during 1980-1989.

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An ad hoc meeting was organised at the Royal College of Physicians of Edinburgh which noted that there was a need to consider what plasma fractionators should do, and that because the level of BSE in the UK was significantly higher than in other countries "it may thus be appropriate to be proactive in this area."

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