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1656168

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether he plans to meet with the UK National Screening Committee to discuss the timescale for implementing an in-service evaluation for spinal muscular atrophy screening in the NHS.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196161
answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196162 196166 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656169

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what information the UK National Screening Committee has provided on the (a) format, (b) scale and (c) duration of the upcoming in-service evaluation for spinal muscular atrophy screening in the NHS.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196162
answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196166 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656170

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
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 he has made of the potential impact of an in-service evaluation for spinal muscular atophy in the NHS on (a) patients and (b) patient families outside of the pilot area.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196163
answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196164 196165 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656171

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
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 he has made of the adequacy of opportunities available to the patient community to input into the (a) design and (b) delivery of the UK National Screening Committee’s upcoming in-service evaluation of spinal muscular astrophy screening in the NHS.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196164
answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196165 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656172

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) ensure and (b) monitor the (i) introduction, (ii) delivery and (iii) completion of the in-service evaluation for spinal muscular atrophy screening in the NHS.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196165
answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196164 196167 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656173

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
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 he has made of the adequacy of the timelines for the UK National Screening Committee’s in-service evaluation for severe combined immunodeficiency screening in the NHS; and whether his Department has plans to reduce the timeline for the upcoming in-service evaluation for spinal muscular atrophy screening.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196166
answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196162 196168 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656174

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
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 he has made of the potential impact of the UK National Screening Committee commissioning a cost-effectiveness modeling study for spinal muscular atrophy on the timeline for implementing newborn screenings across the UK.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196167
answer	answer is ministerial correction date of answer 11/09/2023 answer text <p>The UK National Screening Committee reviewed screening for spinal muscular atrophy in June 2023. While acknowledging recent developments, it found that more evidence was needed to assess how screening might work safely in the United Kingdom.</p><p>Its recommendation was to develop a new cost effectiveness modelling study for the UK screening context, as well as start scoping in-service evaluation work in live services in the National Health Service in the UK.</p><p>Planning is now underway for the modelling and in-service evaluation, which will help to address these uncertainties and unanswered questions. The UK National Screening Committee will continue to engage with spinal muscular atrophy stakeholders to help shape and input into the work and will keep the public updated via blog articles and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196163 196164 196165 196169 196171 196172 question first answered 11/09/2023 13:22:23 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656175

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Babies
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether he has made an estimate of the number of babies born with spinal muscular atrophy that may experience irreversible disability between August 2023 and the conclusion of the review into newborn screening.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196168
answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196162 196166 196170 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656177

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, whether he plans to expedite the introduction of newborn spinal muscular atrophy screenings.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196170
answer	answer is ministerial correction date of answer 06/09/2023 answer text <p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service. Around 70 babies a year are born with SMA in the United Kingdom (around 1 in every 10,000 live births), with approximately 60% of those having type 1 SMA (SMA1).</p><p> </p><p>The new model will help define important issues for the in-service evaluation, while the evaluation will be used to collect data to feed into the model and test its assumptions. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p><p> </p><p>Work is still in the planning stages therefore timescales are not established yet. The UK NSC will keep ministers informed, and the public up to date on progress via its blog and ongoing stakeholder engagement.</p> answering member constituency Colchester answering member printed Will Quince grouped question UIN 196161 196162 196166 196168 question first answered 06/09/2023 13:58:18 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd

1656180

registered interest
date	01/09/2023
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	Spinal Muscular Atrophy: Screening
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 he has made of the potential merits of introducing newborn screening for spinal muscular atrophy on the priorities of the UK Rare Disease Framework.
tabling member constituency	Bootle
tabling member printed	Peter Dowd
uin	196173
answer	answer is ministerial correction date of answer 08/09/2023 answer text <p>The Rare Diseases Framework is a high-level document containing overarching priorities and underpinning themes for rare disease policy up to 2025. The Framework is not focused on specific diseases but aims to improve the lives of all people living with rare conditions. As such, no assessment has been made.</p><p>In June 2023, the UK National Screening Committee (UK NSC) recommended that a modelling study be carried out alongside an in-service evaluation of spinal muscular atrophy (SMA) screening in the National Health Service in the United Kingdom. This important work will give the UK NSC the evidence it needs to assess how newborn screening for SMA might work safely in the UK.</p> answering member constituency Colchester answering member printed Will Quince question first answered 08/09/2023 12:11:43 answering member 4423 label Biography information for Will Quince
tabling member	4397 label Biography information for Peter Dowd