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1024698

	registered interest
	date	13/12/2018
	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	Orphan Drugs
	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 is taking steps to introduce a revised definition for ultra-orphan medicine.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	202090
	answer	answer is ministerial correction date of answer 20/12/2018 answer text <p>Currently, rare diseases are defined as conditions affecting no more than five in 10,000 people in the European Union. The new European Clinical Trial Regulation (Regulation (EU) No 536/2014) will introduce an ‘ultra-rare’ condition and states that clinical trials for the development of orphan medicinal products and those of medicines affecting no more than one person in 50,000 in the EU (ultra-rare diseases) should be fostered, and in such areas, a rapid yet in-depth assessment is of particular importance. The new clinical trials regulation is expected to be implemented in the EU in late 2020. The Government has confirmed that United Kingdom law will remain aligned with the parts of the new EU clinical trials Regulation that are within the UK’s control.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 20/12/2018 17:10:46 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

1024700

	registered interest
	date	13/12/2018
	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	Rare Diseases: Drugs
	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 he is taking to ensure that the UK remains a world leader for the treatment of rare diseases after the UK leaves the EU.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	202091
	answer	answer is ministerial correction date of answer 20/12/2018 answer text <p>The Government is committed to the safe and effective regulation of medicines in the United Kingdom; ensuring patients and the public have fast access to new, innovative medicines, including medicines for rare diseases.</p><p> </p><p>The agreement of an implementation period will ensure that access to medicines continues, and patient safety is maintained, in both the UK and European Union markets. Beyond that, the Political Declaration sets out a plan for a free trade area for goods, underpinned by deep regulatory co-operation, as well as a joint commitment to explore close cooperation with the European Medicines Agency.</p><p> </p><p>The Government also continues to prepare for the unlikely outcome that we leave the EU without any deal in March 2019. The Department has been engaging with all pharmaceutical companies that supply the United Kingdom with pharmacy or prescription-only medicines from, or via, the EU/European Economic Area, on their contingency plans in the event of a no deal EU Exit.</p><p> </p><p>Whatever the exit scenario, we will work to ensure that the UK will remain a world leader for the treatment of rare diseases after the UK leaves the EU, that UK patients are able to access the best and most innovative medicines including medicines for rare diseases and that their safety is protected. The UK life sciences industry has much to offer in creating, developing, trialing and commercialising medicines that will benefit UK patients and strengthen the ability of the UK to compete internationally.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 20/12/2018 17:07:43 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

746855

	registered interest
	date	29/06/2017
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, if he will make it his policy to double research funding for Motor Neurone Disease.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	2092
	answer	answer is ministerial correction date of answer 06/07/2017 answer text <p>The Department funds research mainly through the National Institute for Health Research (NIHR). The Medical Research Council (MRC), an independent research funding body which receives its grant in aid from the Department for Business, Energy and Industrial Strategy also funds medical research.</p><p> </p><p>The usual practice of the NIHR and of the MRC is not to ring-fence funds for expenditure on particular topics: research proposals in all areas compete for the funding available. 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><p> </p><p>The MRC currently spends approximately £5.3 million per annum on research relating to Motor Neurone Disease (MND). The MRC, as part of the Network of Centres of Excellence in Neurodegeneration, has recently made available up to £1 million to support research in the United Kingdom.</p><p> </p><p>Spend by the NIHR in the Health Research Classification System (HRCS) health category ‘neurological’ has increased from £29.9 million in 2010/11 to £52.6 million in 2015/16 (the latest year for which data is available). There are no HRCS health sub-categories such as for MND or other specific neurological conditions, and information on total annual NIHR spend on research into treating MND is not held.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 06/07/2017 15:45:09 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

746856

	registered interest
	date	29/06/2017
	answering body	Department of Health
	answering dept id	17
	answering dept short name	Health
	answering dept sort name	Health
	hansard heading	Brain: Tumours
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health, if he will bring forward proposals to increase funding for brain tumour research over the current Parliament; and if he will make a statement.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	2093
	answer	answer is ministerial correction date of answer 04/07/2017 answer text <p>The Department Task and Finish Working Group on Brain Tumour Research is bringing together clinicians, charities, patients, and officials to discuss how, working together with research funding partners, we can address the need to increase the level and impact of research into brain tumours. The Working Group is chaired by Professor Chris Whitty, the Department's Chief Scientific Adviser. The Working Group met for the third time on 17 May, and plans to report to the Parliamentary Under Secretary of State for Health (Lord O’Shaughnessy) by autumn 2017.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price question first answered 04/07/2017 14:10:18 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

846144

	registered interest
	date	21/02/2018
	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	Patients: Death
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what guidelines his Department has in place for medical staff dealing with hospital deaths where the deceased has requested to be preserved using cryonics.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	128838
	answer	answer is ministerial correction date of answer 28/02/2018 answer text <p>The Department has not issued guidance to medical staff dealing with hospital deaths where the deceased has requested to be preserved using cryogenics. There are no current plans to amend the Human Tissue Act or bring forward legislative proposals in this area.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price grouped question UIN 128839 128840 question first answered 28/02/2018 14:53:51 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

846145

	registered interest
	date	21/02/2018
	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	Human Tissue (Quality and Safety for Human Application) (Amendment) Regulations 2018
	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 amend the draft Human Tissue (Quality and Safety for Human Application) (Amendment) Regulations 2018 to include the regulation of cryopreservation of (a) complete bodies and (b) heads.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	128839
	answer	answer is ministerial correction date of answer 28/02/2018 answer text <p>The Department has not issued guidance to medical staff dealing with hospital deaths where the deceased has requested to be preserved using cryogenics. There are no current plans to amend the Human Tissue Act or bring forward legislative proposals in this area.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price grouped question UIN 128838 128840 question first answered 28/02/2018 14:53:51 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day

846146

	registered interest
	date	21/02/2018
	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	Human Tissue (Quality and Safety for Human Application) (Amendment) Regulations 2018
	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 make it his policy to bring forward legislative proposals for the regulation by the Human Tissue Authority on the removal of (a) bodies and (b) heads for cryopreservation.
	tabling member constituency	Linlithgow and East Falkirk
	tabling member printed	Martyn Day
	uin	128840
	answer	answer is ministerial correction date of answer 28/02/2018 answer text <p>The Department has not issued guidance to medical staff dealing with hospital deaths where the deceased has requested to be preserved using cryogenics. There are no current plans to amend the Human Tissue Act or bring forward legislative proposals in this area.</p> answering member constituency Thurrock answering member printed Jackie Doyle-Price grouped question UIN 128838 128839 question first answered 28/02/2018 14:53:51 answering member 4065 label Biography information for Dame Jackie Doyle-Price
	tabling member	4488 label Biography information for Martyn Day