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 \u2018ultra-rare\u2019 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\u2019s control.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4065", "label" : {"_value" : "Biography information for Dame Jackie Doyle-Price"} } , "answeringMemberConstituency" : {"_value" : "Thurrock"} , "answeringMemberPrinted" : {"_value" : "Jackie Doyle-Price"} , "dateOfAnswer" : {"_value" : "2018-12-20", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2018-12-20T17:10:46.507Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2018-12-13", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Orphan Drugs"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "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.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4488", "label" : {"_value" : "Biography information for Martyn Day"} } , "tablingMemberConstituency" : {"_value" : "Linlithgow and East Falkirk"} , "tablingMemberPrinted" : [{"_value" : "Martyn Day"} ], "uin" : "202090"} , {"_about" : "http://data.parliament.uk/resources/1024700", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1024700/answer", "answerText" : {"_value" : "
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>
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>
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>
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>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4065", "label" : {"_value" : "Biography information for Dame Jackie Doyle-Price"} } , "answeringMemberConstituency" : {"_value" : "Thurrock"} , "answeringMemberPrinted" : {"_value" : "Jackie Doyle-Price"} , "dateOfAnswer" : {"_value" : "2018-12-20", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2018-12-20T17:07:43.307Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2018-12-13", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Rare Diseases: Drugs"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "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.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4488", "label" : {"_value" : "Biography information for Martyn Day"} } , "tablingMemberConstituency" : {"_value" : "Linlithgow and East Falkirk"} , "tablingMemberPrinted" : [{"_value" : "Martyn Day"} ], "uin" : "202091"} , {"_about" : "http://data.parliament.uk/resources/1015370", "AnsweringBody" : [{"_value" : "Ministry of Housing, Communities and Local Government"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1015370/answer", "answerText" : {"_value" : "
The Government collects quarterly and annual statistics on how many people make homelessness applications to local authorities in England. This information can be found here:<\/p>
<\/p><\/td> | 2017-18<\/p><\/td><\/tr> |
Account<\/p><\/td> | £000s<\/p><\/td><\/tr> |
Driver Fee Paying Enquiries<\/p><\/td> | 4,597<\/p><\/td><\/tr> |
Vehicle Fee Paying Enquiries<\/p><\/td> | 350<\/p><\/td><\/tr> |
Electronic Data Link Fee Paying Enquiries<\/p><\/td> | 15,951<\/p><\/td><\/tr> |
Receipts / Sale Vehicles including Bulk Data<\/p><\/td> | 1,920<\/p><\/td><\/tr> |
Total<\/strong><\/p><\/td> 22,818<\/strong><\/p><\/td><\/tr><\/tbody><\/table> <\/p> <\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/3991", "label" : {"_value" : "Biography information for Jesse Norman"}
}
, "answeringMemberConstituency" : {"_value" : "Hereford and South Herefordshire"}
, "answeringMemberPrinted" : {"_value" : "Jesse Norman"}
, "dateOfAnswer" : {"_value" : "2018-11-12", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2018-11-12T17:59:22.733Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "27"}
, "answeringDeptShortName" : {"_value" : "Transport"}
, "answeringDeptSortName" : {"_value" : "Transport"}
, "date" : {"_value" : "2018-11-06", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Driver and Vehicle Licensing Agency"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Transport, how much revenue the Driver and Vehicle Licensing Agency raised from selling personal data to third parties in the last financial year.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/4488", "label" : {"_value" : "Biography information for Martyn Day"}
}
, "tablingMemberConstituency" : {"_value" : "Linlithgow and East Falkirk"}
, "tablingMemberPrinted" : [{"_value" : "Martyn Day"}
], "uin" : "188880"}
, {"_about" : "http://data.parliament.uk/resources/1002619", "AnsweringBody" : [{"_value" : "Home Office"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1002619/answer", "answerText" : {"_value" : " The repsonse for UIN 177354 was answered on the 12th November 2018.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4048", "label" : {"_value" : "Biography information for Caroline Nokes"}
}
, "answeringMemberConstituency" : {"_value" : "Romsey and Southampton North"}
, "answeringMemberPrinted" : {"_value" : "Caroline Nokes"}
, "dateOfAnswer" : {"_value" : "2018-11-12", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2018-11-12T17:46:56.1Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "1"}
, "answeringDeptShortName" : {"_value" : "Home Office"}
, "answeringDeptSortName" : {"_value" : "Home Office"}
, "date" : {"_value" : "2018-11-06", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Home Office: Written Questions"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for the Home Department, pursuant to Question 177354 which was asked on 9 October 2018, when his Department plans to answer that question; and for what reason that question has not yet been answered.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/4488", "label" : {"_value" : "Biography information for Martyn Day"}
}
, "tablingMemberConstituency" : {"_value" : "Linlithgow and East Falkirk"}
, "tablingMemberPrinted" : [{"_value" : "Martyn Day"}
], "uin" : "188881"}
, {"_about" : "http://data.parliament.uk/resources/1001988", "AnsweringBody" : [{"_value" : "Department for Business, Energy and Industrial Strategy"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1001988/answer", "answerText" : {"_value" : " Government takes firework safety very seriously and the Office for Product Safety and Standards is working with industry, retailers, charities and others, including RoSPA, to promote the safe, responsible, and considerate use of fireworks.<\/p> <\/p> There are already controls on noise levels for fireworks and it is an offence to supply fireworks exceeding 120 decibels to the public. There are no plans to amend the regulations to reduce this level.<\/p> <\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4487", "label" : {"_value" : "Biography information for Kelly Tolhurst"}
}
, "answeringMemberConstituency" : {"_value" : "Rochester and Strood"}
, "answeringMemberPrinted" : {"_value" : "Kelly Tolhurst"}
, "dateOfAnswer" : {"_value" : "2018-11-12", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2018-11-12T17:26:36.137Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "201"}
, "answeringDeptShortName" : {"_value" : "Business, Energy and Industrial Strategy"}
, "answeringDeptSortName" : {"_value" : "Business, Energy and Industrial Strategy"}
, "date" : {"_value" : "2018-11-05", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Fireworks: Noise"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Business, Energy and Industrial Strategy, whether his Department plans to amend the regulations on the sale or use of fireworks (a) to reduce the maximum decibel level of fireworks purchasable by the general public and (b) encourage the use of low noise fireworks.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/4488", "label" : {"_value" : "Biography information for Martyn Day"}
}
, "tablingMemberConstituency" : {"_value" : "Linlithgow and East Falkirk"}
, "tablingMemberPrinted" : [{"_value" : "Martyn Day"}
], "uin" : "188142"}
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