Haemoglobinopathies (Hansard, 10 December 2001)

§ Mr. Goodman
To ask the Secretary of State for Health when he will assess the effectiveness of the neonatal screening programme for haemoglobinopathies to be introduced next year; and what criteria he will use. [19103]

§ Jacqui Smith
The NHS plan sets out our commitment to introduce by 2004 a new and effective screening programme for women and children including a new national linked antenatal and neonatal programme for haemoglobinopathies.
The effectiveness of the programme will be assessed by factors such as the uptake of screening, the effect of follow up treatment and experiences of the people using the service.

§ Mr. Goodman
To ask the Secretary of State for Health how many bone marrow transplants were carried out in the United Kingdom during the past five years in relation to(a) sickle cell, (b) thalassaemia and (c) other haemoglobinopathies; and with what success rate. [18902]
720W

§ Jacqui Smith
The latest figures at April 2001 show that 99 transplants for haemoglobinopathy have been reported to the United Kingdom Children's Bone Marrow Transplant Registry since 1993. 17 children have received transplants for sickle cell disease, 16 are alive (94 per cent.) and 15 (88 per cent.) are cured. 77 children with thalassaemia have been transplanted and have undergone 82 procedures. 69 are alive (90 per cent. ) and 62 (81 per cent.) are cured.

§ Mr. Goodman
To ask the Secretary of State for Health what plans the Standing Medical Advisory Committee has to issue a further report on sickle cell, thalassaemia and other haemoglobinopathies. [18892]

§ Jacqui Smith
The Standing Medical Advisory Committee has no plans to issue a further report on sickle cell, thalassaemia and other haemoglobinopathies.

§ Mr. Goodman
To ask the Secretary of State for Health what Government expenditure on directly commissioned research into(a) sickle cell, (b) thalassaemia and (c) other haemoglobinopathies was in (i) 1999 and (ii) 2000. [18901]

§ Jacqui Smith
The main Government agency for research into the causes of and treatments for disease is the Medical Research Council (MRC), which receives its funding via the Department of Trade and Industry. In 1999–2000, the MRC expenditure on all haemoglobinopathies was £815,000. In 2000–01, the MRC expenditure was £823,000.
The Department funds research to support policy development and the delivery of effective practice in the national health service. Research programme and project details can be found on relevant websites, especially that of the National Research Register (NRR), all of which can be accessed through www.doh.gov.uk/research.
The Department core funds the Centre for Reviews and Dissemination and 22 Cochrane Review Groups, one of which, on cystic fibrosis and genetic disorders, covers this area. Details of reviews can be found on the National Research Register and outputs can be found on the research findings register and/or the Cochrane Database.
The financial information requested for Department of Health funded projects could be provided only at disproportionate cost. Management of much of the research supported by NHS research and development programmes is devolved. Expenditure at project level is not held centrally at this level of detail.