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1645293

registered interest
date	16/06/2023
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, if he will add 22q11.2 Syndromes to the standard blood screen test for new-borns.
tabling member constituency	Banff and Buchan
tabling member printed	David Duguid
uin	189990
answer	answer is ministerial correction date of answer 21/06/2023 answer text <p>There are no plans to add 22q11.2 syndromes to the new-born blood spot screening programme. Proposals to expand screening for new-born blood spot screening must be submitted to the UK National Screening Committee (UK NSC) for assessment against its criteria to ensure screening is introduced where the benefit clearly outweighs the harm.</p><p>The UK NSC runs an annual call for topics in September where members of the pubic and stakeholders can submit new topics to be considered. The UK NSC carried out a review for 22q11.2 Syndrome in 2018 following an annual call submission and recommended that at the time the evidence was insufficient to recommend a screening programme.</p> answering member constituency Harborough answering member printed Neil O'Brien question first answered 21/06/2023 16:56:18 answering member 4679 label Biography information for Neil O'Brien
tabling member	4606 label Biography information for David Duguid

1077183

registered interest
date	25/02/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential effect on the public purse of adding a test for 22q11 deletion syndrome to the newborn blood spot test.
tabling member constituency	Banff and Buchan
tabling member printed	David Duguid
uin	225599
answer	answer is ministerial correction date of answer 06/03/2019 answer text <p>No assessment has been made on adding a test for 22q11 deletion syndrome to the newborn blood spot test as the United Kingdom National Screening Committee’s (UK NSC) had not previously been asked to look at this condition.</p><p> </p><p>However, as part of the UK NSC`s annual call for topics 2018, a proposal was received to consider adding the condition of 22q11 deletion syndrome (also known as DiGeorge syndrome) to the new born blood spot programme.</p><p> </p><p>This is the first time the UK NSC has been asked to consider screening for 22q11. The UK NSC will be reviewing the proposal at its meeting at the end of the month and to agree next steps. Minutes of the meeting will then be published six weeks after and be made available at the following link:</p><p> </p><p><a href="https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc" target="_blank">https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc</a></p> answering member constituency Winchester answering member printed Steve Brine grouped question UIN 225600 question first answered 06/03/2019 16:41:39 answering member 4067 label Biography information for Steve Brine
tabling member	4606 label Biography information for David Duguid

1077184

registered interest
date	25/02/2019
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what his Department’s policy is on adding a test for 22q11 deletion syndrome to the newborn blood spot test.
tabling member constituency	Banff and Buchan
tabling member printed	David Duguid
uin	225600
answer	answer is ministerial correction date of answer 06/03/2019 answer text <p>No assessment has been made on adding a test for 22q11 deletion syndrome to the newborn blood spot test as the United Kingdom National Screening Committee’s (UK NSC) had not previously been asked to look at this condition.</p><p> </p><p>However, as part of the UK NSC`s annual call for topics 2018, a proposal was received to consider adding the condition of 22q11 deletion syndrome (also known as DiGeorge syndrome) to the new born blood spot programme.</p><p> </p><p>This is the first time the UK NSC has been asked to consider screening for 22q11. The UK NSC will be reviewing the proposal at its meeting at the end of the month and to agree next steps. Minutes of the meeting will then be published six weeks after and be made available at the following link:</p><p> </p><p><a href="https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc" target="_blank">https://www.gov.uk/government/groups/uk-national-screening-committee-uk-nsc</a></p> answering member constituency Winchester answering member printed Steve Brine grouped question UIN 225599 question first answered 06/03/2019 16:41:39 answering member 4067 label Biography information for Steve Brine
tabling member	4606 label Biography information for David Duguid

922498

registered interest
date	12/06/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what recent steps he has taken to improve (a) awareness of and (b) diagnosis of 22Q11 deletion syndrome.
tabling member constituency	Oxford West and Abingdon
tabling member printed	Layla Moran
uin	152852
answer	answer is ministerial correction date of answer 15/06/2018 answer text <p>22q11.2 deletion syndrome is a disorder that involves many different areas of the body and the severity can vary among patients. 22q11.2 deletion syndrome is an integral part of the immunodeficiency section of the training curriculum for paediatric and adult immunologists. In addition, cardiac aspects of 22q deletion syndrome are specifically included in the curriculum for paediatric cardiology.</p><p> </p><p>There are 32 immunology centres accredited or working towards accreditation with the Quality in Primary Immunodeficiency Services programme including a number of paediatric immunology centres located across the United Kingdom, which provide services for patients affected by the disease. Such accreditation processes means that specialist expertise can be more readily available across the country and provide access to the services need in the diagnosis of this disease.</p> answering member constituency Winchester answering member printed Steve Brine question first answered 15/06/2018 14:49:29 answering member 4067 label Biography information for Steve Brine
tabling member	4656 label Biography information for Layla Moran

788516

registered interest
date	13/11/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what his policy is on (a) research into, (b) treatment of and (c) raising awareness of 22q11.2 Deletion syndrome.
tabling member constituency	Banff and Buchan
tabling member printed	David Duguid
uin	112516
answer	answer is ministerial correction date of answer 21/11/2017 answer text <p>22q11.2 deletion syndrome, also known as DiGeorge syndrome, is a disorder that involves many different areas of the body and the severity can vary among patients.</p><p> </p><p>The National Institute for Health Research (NIHR) and Medical Research Council support research in response to proposals from the research community and welcome high quality applications for support into any aspect of human health, including 22q11.2 deletion syndrome. These proposals 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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.</p><p> </p><p>A number of United Kingdom centres contribute to active research programmes such as recently published research lead by Great Ormond Street into Thymus transplantation for complete DiGeorge syndrome. NIHR also fund relevant research at Great Ormond Street Biomedical Research Centre and the Maudsley Biomedical Research Centre.</p><p> </p><p>There are 32 Immunology centres accredited including a number of paediatric immunology centres, Great Ormond Street Hospital, Newcastle Children’s Hospital, Birmingham and Manchester which provide services for these patients. These services are geographically spread out to meet the access needs of patients across the UK. Conditions such as 22q deletion syndrome are also an integral part of the immunodeficiency section of the training curriculum for paediatric and adult immunologists thus ensuring that expertise is acquired by these doctors and dispersed throughout the National Health Service.</p><p> </p><p>An important landmark for patients with rare diseases was the publication of the 2013 UK Strategy for Rare Diseases to address the needs of all those affected by rare diseases. A progress report on the Strategy will be published in early 2018.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 21/11/2017 13:47:10 answering member 4065 label Biography information for Dame Jackie Doyle-Price
tabling member	4606 label Biography information for David Duguid

442400

registered interest
date	04/01/2016
answering body	Department for Work and Pensions
answering dept id	29
answering dept short name	Work and Pensions
answering dept sort name	Work and Pensions
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Work and Pensions, what account is taken of 22q11.2 deletion syndrome in assessing health conditions as part of work capability assessments.
tabling member constituency	Thirsk and Malton
tabling member printed	Kevin Hollinrake
uin	20711
answer	answer is ministerial correction date of answer 11/01/2016 answer text <p>Entitlement to Employment and Support Allowance (ESA) is based not on what health conditions a claimant has, but on the functional impact of those conditions. During the Work Capability Assessment claimants are assessed against a number of descriptors covering physical, mental, cognitive and intellectual functions. The healthcare professional makes a recommendation on the individual’s functional capability to the DWP Decision Maker, who makes the decision on benefit entitlement by considering all available evidence, including the assessment report and any additional clinical information.</p> answering member constituency Witham answering member printed Priti Patel question first answered 11/01/2016 15:24:13 answering member 4066 label Biography information for Priti Patel
tabling member	4474 label Biography information for Kevin Hollinrake

439042

registered interest
date	16/12/2015
answering body	Department for Work and Pensions
answering dept id	29
answering dept short name	Work and Pensions
answering dept sort name	Work and Pensions
hansard heading	22q11.2 Deletion Syndrome
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Work and Pensions, whether training is given to work capability assessors in the symptoms and effects of 22q11.2 deletion syndrome.
tabling member constituency	Thirsk and Malton
tabling member printed	Kevin Hollinrake
uin	20393
answer	answer is ministerial correction date of answer 05/01/2016 answer text <p>All healthcare professionals receive comprehensive training in disability analysis which includes a functional evaluation as to how medical conditions affect their ability to perform day-to-day activities. Prior to carrying-out an assessment they routinely refresh their knowledge of any condition with which they are not fully familiar.</p> answering member constituency Witham answering member printed Priti Patel question first answered 05/01/2016 12:39:16 answering member 4066 label Biography information for Priti Patel
tabling member	4474 label Biography information for Kevin Hollinrake