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Haemophilia

Volume 497: debated on Wednesday 14 October 2009

To ask the Secretary of State for Health (1) how many tissue or blood samples taken from UK haemophiliacs in the last three years are held by the National Creutzfeldt-Jakob Disease Surveillance Unit; (292343)

(2) how many tissue or blood samples taken from UK haemophiliacs who are deceased are held by the National Creutzfeldt-Jakob Disease Surveillance Unit;

(3) how many tissue or blood samples taken from UK haemophiliacs and held by the National Creutzfeldt-Jakob Disease Surveillance Unit have been tested to date.

In the past three years (January 2006 to date), as part of an ethically approved surveillance study, the National Creutzfeldt-Jakob Disease Surveillance Unit (NCJDSU) has received and tested 252 tissue samples from 12 patients with haemophilia for the presence of disease-associated protein. Of these 15 tissue samples were from five living people, and 237 tissue samples from seven deceased people. All samples were tested, and all samples had consent prior to them being sent to the NCJDSU for testing. No blood samples were received or tested.

To date, in total the NCJDSU holds 372 tissue, and no blood, samples from a total of 12 deceased patients with haemophilia.

All samples received by the NCJDSU have been tested.

To ask the Secretary of State for Health whether tissue or blood samples taken from UK haemophiliacs, and held as library samples, have been tested for the presence of the PA virus in the last three years. (292347)

To ask the Secretary of State for Health what recent advice his Department has sought on individual haemophiliacs' unique experience of multiple virus exposure, and its consequences for their health and treatment. (292348)

In the past year departmental officials have met with officials of the Haemophilia Society and, separately, with representatives of the UK Haemophilia Centre Doctors' Organisation. Haemophilia patients' experience of multiple virus exposure was discussed at some of these meetings.