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891534
star this property registered interest false more like this
star this property date less than 2018-04-25more like thismore than 2018-04-25
star this property answering body
Department of Health and Social Care more like this
star this property answering dept id 17 remove filter
unstar this property answering dept short name Health and Social Care remove filter
star this property answering dept sort name Health and Social Care more like this
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property question text to ask the Secretary of State for Health and Social Care, what lessons have been learned from the 100,000 Genome Project which will help when deciding what genetic diseases should be screened for at birth. more like this
star this property tabling member constituency Bristol North West more like this
star this property tabling member printed
Darren Jones more like this
star this property uin 138095 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2018-04-30more like thismore than 2018-04-30
star this property answer text <p>The 100,000 Genomes Project is focussed on recruiting patients, including children, with rare diseases (and their family members) and those with common cancers. These are areas where whole genome sequencing may offer the best opportunity to diagnose disease. From the Project’s pilot phase we have found actionable findings in 20-25% of rare disease patients.</p><p> </p><p>The scope of the project does not include screening at birth. The Chief Medical Officer, in her annual report Generation Genome, recommended that that the National Screening Committee conducts a systematic evaluation of the opportunities offered by genomics for present and potential screening practices.</p> more like this
star this property answering member constituency Gosport more like this
star this property answering member printed Caroline Dinenage more like this
star this property question first answered
less than 2018-04-30T15:41:08.457Zmore like thismore than 2018-04-30T15:41:08.457Z
star this property answering member
4008
unstar this property label Biography information for Dame Caroline Dinenage more like this
star this property tabling member
4621
unstar this property label Biography information for Darren Jones more like this
1625258
star this property registered interest false more like this
star this property date less than 2023-05-02more like thismore than 2023-05-02
star this property answering body
Department of Health and Social Care more like this
star this property answering dept id 17 remove filter
unstar this property answering dept short name Health and Social Care remove filter
star this property answering dept sort name Health and Social Care more like this
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property question text To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with undiagnosed genetic conditions. more like this
star this property tabling member constituency Blaydon more like this
star this property tabling member printed
Liz Twist more like this
star this property uin 183532 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2023-05-15more like thismore than 2023-05-15
star this property answer text <p>Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.</p><p>In the England Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for patients with undiagnosed conditions’ (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.</p>
star this property answering member constituency Faversham and Mid Kent more like this
star this property answering member printed Helen Whately more like this
star this property grouped question UIN
183533 more like this
183534 more like this
star this property question first answered
less than 2023-05-15T16:12:18.183Zmore like thismore than 2023-05-15T16:12:18.183Z
star this property answering member
4527
unstar this property label Biography information for Helen Whately more like this
star this property previous answer version
73633
star this property answering member constituency Faversham and Mid Kent more like this
star this property answering member printed Helen Whately more like this
star this property answering member
4527
star this property label Biography information for Helen Whately more like this
star this property tabling member
4618
unstar this property label Biography information for Liz Twist more like this
1190617
star this property registered interest false more like this
star this property date less than 2020-04-27more like thismore than 2020-04-27
star this property answering body
Department of Health and Social Care more like this
star this property answering dept id 17 remove filter
unstar this property answering dept short name Health and Social Care remove filter
star this property answering dept sort name Health and Social Care more like this
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property question text To ask the Secretary of State for Health and Social Care, what recent progress his Department has made on research into the treatment of mitochondrial disease. more like this
star this property tabling member constituency The Wrekin more like this
star this property tabling member printed
Mark Pritchard more like this
star this property uin 40538 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2020-05-11more like thismore than 2020-05-11
star this property answer text <p>The Department’s National Institute for Health Research (NIHR) supports three Biomedical Research Centres (BRC) and two Clinical Research Facilities that are carrying out research on mitochondrial disease. This includes a project from the NIHR BRC in Great Ormond Street on novel diagnostic and therapeutic approaches for mitochondrial disorders.</p><p>The NIHR welcomes funding applications for research into any aspect of human health, including mitochondrial disease; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.</p> more like this
star this property answering member constituency Faversham and Mid Kent more like this
star this property answering member printed Helen Whately more like this
star this property question first answered
less than 2020-05-11T12:03:24.46Zmore like thismore than 2020-05-11T12:03:24.46Z
star this property answering member
4527
unstar this property label Biography information for Helen Whately more like this
star this property tabling member
1576
unstar this property label Biography information for Mark Pritchard more like this
1642404
star this property registered interest false more like this
star this property date less than 2023-06-06more like thismore than 2023-06-06
star this property answering body
Department of Health and Social Care more like this
star this property answering dept id 17 remove filter
unstar this property answering dept short name Health and Social Care remove filter
star this property answering dept sort name Health and Social Care more like this
star this property hansard heading Hereditary Diseases remove filter
star this property house id 2 more like this
star this property legislature
25277
star this property pref label House of Lords more like this
star this property question text To ask His Majesty's Government, further to the Written Answer by Earl Howe on 15 July 2013 (HL1303), what progress the Human and Embryology Authority is able to report that may correspond to previous estimates that mitochondria replacement techniques could "save the lives of up to 10 babies who are born every year with a severe form of the disease, such as those with high levels of mutations". more like this
star this property tabling member printed
Lord Alton of Liverpool more like this
star this property uin HL8241 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2023-06-14more like thismore than 2023-06-14
star this property answer text <p>The Human Fertilisation and Embryology Authority has advised that it has made no assessment of the estimates previously made by the Wellcome Trust Centre for Mitochondrial Research at Newcastle University, as the number of treatments to date in the United Kingdom is so low.</p> more like this
star this property answering member printed Lord Markham more like this
star this property question first answered
less than 2023-06-14T13:40:46.277Zmore like thismore than 2023-06-14T13:40:46.277Z
star this property answering member
4948
unstar this property label Biography information for Lord Markham more like this
star this property tabling member
738
unstar this property label Biography information for Lord Alton of Liverpool more like this