Mar. 27 2023
Source Page: Freedom of Information responses from the MHRA - week commencing 13 June 2022Found: Psychological dependence is thought to result from neurological changes, with genetic, psychosocial,
Oct. 21 2022
Source Page: Clinical commissioning policy: Treatment of iron overload for transfused and non-transfused patients with chronic inherited anaemias (all ages)Found: The inherited genetic changes leading to SCD and thalassaemia are associated with an individual’s ethnic
Jul. 19 2023
Source Page: Human Medicines Regulations 2012 Advisory Bodies Annual Report 2022Found: This medicine is proposed to be used when the cancer cells have a genetic change that allows the cancer
Asked by: Daniel Kawczynski (Conservative - Shrewsbury and Atcham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make funding available for a national screening trial for genetic haemochromatosis.
Answered by Maria Caulfield
No funding has been made available for a national screening trial for genetic haemochromatosis as the UK National Screening Committee (UK NSC) does not commission trials for screening. This would be a consideration for the National Institute for Health Research to consider.
The UK NSC reviewed the evidence to introduce screening for Haemochromatosis in 2021 and recommended that a population screening programme should not be introduced. The UK NSC reported on the gaps in the evidence base so others might set up research trials to advance the development base for this condition.
Asked by: Fleur Anderson (Labour - Putney)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve early diagnosis of genetic haemochromatosis.
Answered by Maria Caulfield
Genetic testing for haemochromatosis is available through the NHS Genomic Medicine Service for patients in England who show unexplained iron overload suggestive of hereditary haemochromatosis. This testing is outlined in the National Genomic Test Directory and is delivered via the national genomic testing network of NHS Genomic Laboratory Hubs.
The UK Rare Diseases Framework outlines four priorities to improve the lives of those living with rare diseases, such as some forms of genetic haemochromatosis. Further details regarding plans to improve diagnosis of rare diseases will be provided in action plans, which will be published by each of the four United Kingdom nations within two years of publication of the Framework. England’s action plan will be published in February 2022.
Mentions:
1: Todd, Maree (SNP - Caithness, Sutherland and Ross) I am one of many people in Scotland who have haemochromatosis—it is a common disorder—a genetic disease - Speech Link
Asked by: Justin Madders (Labour - Ellesmere Port and Bromborough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether (a) he and (b) officials in his Department have had discussions with relevant stakeholders on the potential merits of allowing flexibility on blood donation rules to permit more frequent donations when there is a clinical need.
Answered by Maria Caulfield
Departmental officials liaise regularly with NHS Blood and Transplant and with the Advisory Committee on the Safety of Blood, Tissues and Organs on a range of topics, including emergency procedures to facilitate increasing blood stocks when necessary.
The Blood Safety and Quality Regulations 2005 include guidance on blood donation frequency with set donor intervals at 12 weeks for men and 16 weeks for women. Intervals are required as too frequent donations can result in serious side effects for donors. The Donor Selection Guidelines provide guidance for clinical exceptions where identified donors, such as individuals with genetic haemochromatosis, can donate blood up to every six weeks for their clinical benefit or need.
Asked by: John Hayes (Conservative - South Holland and The Deepings)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to incorporate blood tests for serum ferritin and transferrin saturation into the NHS Health Check, as a cost-effective means of identifying people at risk of iron overload from genetic haemochromatosis earlier in life.
Answered by Jo Churchill
Public Health England has no current plans to do so.
Sep. 14 2021
Source Page: Personal Independence Payment statistics to July 2021Found: 2240 690 700 50 410 5070 21.24565972222222 48.52430555555556 15.01736111111111 15.21267361111111 Genetic
Asked by: John Hayes (Conservative - South Holland and The Deepings)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what is the timetable for publication of the conclusions of the UK National Screening Committee’s review of screening for genetic haemochromatosis in adults.
Answered by Jo Churchill
The United Kingdom National Screening Committee (UK NSC) will be reviewing the evidence alongside comments received from the public consultation on screening for hereditary hemochromatosis at its meeting on 5 March 2021. The UK NSC’s recommendation will then be shared with the Department for consideration.