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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/63663", "AnsweringBody" : [{"_value" : "Foreign and Commonwealth Office"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/63663/answer", "answerText" : {"_value" : "
I met representatives from six human rights organisations, including Oxfam and Christian Aid as well as Colombian non-governmental organisations (NGOs) during my visit to Bogotá last week. I also met two Deputy Ministers for Foreign Affairs, heads of the Colombian Government's major human rights agencies and representatives of the Attorney-General's office. I set out HM Government concern about the reported rise in attacks against human rights defenders and a lack of sentences for those responsible.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/1408", "label" : {"_value" : "Biography information for Lord Swire"} } , "answeringMemberConstituency" : {"_value" : "East Devon"} , "answeringMemberPrinted" : {"_value" : "Mr Hugo Swire"} , "dateOfAnswer" : {"_value" : "2014-06-30", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "202086"} , {"_value" : "202087"} , {"_value" : "202088"} , {"_value" : "202091"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2014-06-30T13:43:25.9907982Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "16"} , "answeringDeptShortName" : {"_value" : "Foreign and Commonwealth Office"} , "answeringDeptSortName" : {"_value" : "Foreign and Commonwealth Office"} , "date" : {"_value" : "2014-06-24", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Colombia"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Foreign and Commonwealth Affairs, if he will make representations to his Colombian counterpart supporting the requests for an investigation into the death of Thomas Rodriguez Cantillo, a SINTRAINAGRO trades union member killed on 9 May 2014.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/1569", "label" : {"_value" : "Biography information for Robert Flello"} } , "tablingMemberConstituency" : {"_value" : "Stoke-on-Trent South"} , "tablingMemberPrinted" : [{"_value" : "Robert Flello"} ], "uin" : "202090"} ], "itemsPerPage" : 10, "page" : 0, "startIndex" : 1, "totalResults" : 2, "type" : ["http://purl.org/linked-data/api/vocab#ListEndpoint", "http://purl.org/linked-data/api/vocab#Page"]} }