http://www.screening.nhs.uk/fattyacidoxidation<\/a><\/p> <\/p>
<\/p>
<\/p>
Improving education and awareness of rare diseases across the healthcare professions, including VLCADD, is a commitment in the UK Strategy for Rare Diseases. The Department continues to work closely with its delivery partners to implement the Strategy.<\/p>
<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/3932", "label" : {"_value" : "Biography information for Dr Dan Poulter"}
}
, "answeringMemberConstituency" : {"_value" : "Central Suffolk and North Ipswich"}
, "answeringMemberPrinted" : {"_value" : "Dr Daniel Poulter"}
, "dateOfAnswer" : {"_value" : "2015-02-09", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2015-02-09T15:58:41.897Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health"}
, "answeringDeptSortName" : {"_value" : "Health"}
, "date" : {"_value" : "2015-02-02", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Hereditary Diseases"}
, "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, what steps his Department has taken to help early diagnosis of very long-chain acyl-CoA dehydrogenase deficiency.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/3985", "label" : {"_value" : "Biography information for Robert Halfon"}
}
, "tablingMemberConstituency" : {"_value" : "Harlow"}
, "tablingMemberPrinted" : [{"_value" : "Robert Halfon"}
], "uin" : "222853"}
, {"_about" : "http://data.parliament.uk/resources/171143", "AnsweringBody" : [{"_value" : "Department of Health"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/171143/answer", "answerText" : {"_value" : "
Raising awareness of all rare diseases amongst practitioners and the public, including very long chain acyl-CoA dehydrogenase deficiency, is a commitment in the UK Strategy for Rare Diseases. The Department continues to work closely with NHS England to implement this commitment.<\/p>
<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/3918", "label" : {"_value" : "Biography information for Jane Ellison"}
}
, "answeringMemberConstituency" : {"_value" : "Battersea"}
, "answeringMemberPrinted" : {"_value" : "Jane Ellison"}
, "dateOfAnswer" : {"_value" : "2015-01-05", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2015-01-05T16:21:42.08Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health"}
, "answeringDeptSortName" : {"_value" : "Health"}
, "date" : {"_value" : "2014-12-17", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Hereditary Diseases"}
, "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, what steps he is taking to raise awareness of very long chain acyl-CoA dehydrogenase deficiency among (a) practitioners and (b) the public.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/4243", "label" : {"_value" : "Biography information for Dan Jarvis"}
}
, "tablingMemberConstituency" : {"_value" : "Barnsley Central"}
, "tablingMemberPrinted" : [{"_value" : "Dan Jarvis"}
], "uin" : "219149"}
, {"_about" : "http://data.parliament.uk/resources/99863", "AnsweringBody" : [{"_value" : "Cabinet Office"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/99863/answer", "answerText" : {"_value" : "
The information requested falls within the responsibility of the UK Statistics Authority. I have asked the Authority to reply.<\/p>
<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/1556", "label" : {"_value" : "Biography information for Mr Rob Wilson"}
}
, "answeringMemberConstituency" : {"_value" : "Reading East"}
, "answeringMemberPrinted" : {"_value" : "Mr Rob Wilson"}
, "attachment" : {"_about" : "http://data.parliament.uk/resources/99863/answer/attachment/1", "fileName" : {"_value" : "PQ 211015 ONS 359.pdf"}
, "title" : "ONS Letter to Member - Infant Deaths"}
, "dateOfAnswer" : {"_value" : "2014-10-23", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2014-10-23T15:48:38.3349681Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "53"}
, "answeringDeptShortName" : {"_value" : "Cabinet Office"}
, "answeringDeptSortName" : {"_value" : "Cabinet Office"}
, "date" : {"_value" : "2014-10-20", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Hereditary Diseases"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Minister for the Cabinet Office, how many infant deaths were caused by MCAD deficiency in (a) East Lancashire, (b) the North West and (c) England in each of the last three years.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/4044", "label" : {"_value" : "Biography information for Andrew Stephenson"}
}
, "tablingMemberConstituency" : {"_value" : "Pendle"}
, "tablingMemberPrinted" : [{"_value" : "Andrew Stephenson"}
], "uin" : "211015"}
, {"_about" : "http://data.parliament.uk/resources/91630", "AnsweringBody" : [{"_value" : "Department of Health"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/91630/answer", "answerText" : {"_value" : "
The Government\u2019s position that mitochondrial donation techniques do not alter personal characteristics and traits of the person reflects information within the April 2011 scientific report of the Human Fertilisation and Embryology Authority convened Expert Panel. The Expert Panel membership at that time included Professor Peter Braude and Professor Robin Lovell-Badge.<\/p>
<\/p>
<\/p>
<\/p>
The working definition of genetic modification in humans, in relation to mitochondrial donation, was determined by the Department in consultation with the Chief Medical Officer for England.<\/p>
<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4020", "label" : {"_value" : "Biography information for George Freeman"}
}
, "answeringMemberConstituency" : {"_value" : "Mid Norfolk"}
, "answeringMemberPrinted" : {"_value" : "George Freeman"}
, "dateOfAnswer" : {"_value" : "2014-10-13", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2014-10-13T14:19:49.5212012Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health"}
, "answeringDeptSortName" : {"_value" : "Health"}
, "date" : {"_value" : "2014-09-11", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Hereditary Diseases"}
, "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, with reference to the Government response to the consultation on draft regulations to permit the use of new treatment techniques to prevent the transmission of a serious mitochondrial disease from mother to child, published in July 2014, whether his Department consulted (a) Dr Andy Greenfield, (b) Professor Peter Braude and (c) Professor Robin Lovell-Badge on the formulation of the statement on page 15 that (i) mitochondrial donation techniques do not alter personal characteristics and traits of the person and (ii) the proposed mitochondrial donation techniques do not constitute genetic modification.", "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" : "209135"}
, {"_about" : "http://data.parliament.uk/resources/65927", "AnsweringBody" : [{"_value" : "Department of Health"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/65927/answer", "answerText" : {"_value" : "
The Wellcome Centre for Mitochondrial Research at Newcastle University have estimated that there are initially 10-20 women per year, of child-bearing age, who carry faulty mitochondrial DNA (mtDNA) and who might decide that mitochondrial donation is the best reproductive option, as noted in my Written Answer of 1 April 2014.<\/p>
<\/p>
It is estimated that at least 1 in 200 children in the United Kingdom are born with faulty mtDNA, as stated in the consultation documentation released 27 February 2014. Whereas the figure of 1 in 6,500 babies, as stated in the press release of 28 June 2013, is an estimation of those thought to go on to develop a more serious mitochondrial disorder. Serious cases can result in fatal liver failure, stroke-like episodes, blindness, muscle disease, diabetes and deafness.<\/p>
<\/p>
Calculating the overall incidence of mitochondrial disease is extremely difficult. The figure of 1 in 200 is based on epidemiological data from the UK and Australia. This disease estimate in the UK is based on observational epidemiological studies from the north east of England which are currently being updated using the data from the 2011 census.<\/p>
<\/p>
The table of disorders caused by unhealthy mtDNA attached as Annex D in the consultation document \u2018Mitochondrial Donation\u2019 was derived from existing published tables, such as the 2011 report by the Expert Panel convened by The Human Fertilisation and Embryology Authority to review safety and efficacy of mitochondrial donation techniques. There is currently no published information of the exact numbers of cases of each of the conditions in Annex D.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/2000", "label" : {"_value" : "Biography information for Earl Howe"}
}
, "answeringMemberPrinted" : {"_value" : "Earl Howe"}
, "dateOfAnswer" : {"_value" : "2014-07-21", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2014-07-21T16:51:16.5940121Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health"}
, "answeringDeptSortName" : {"_value" : "Health"}
, "date" : {"_value" : "2014-07-07", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Hereditary Diseases"}
, "houseId" : {"_value" : "2"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25277", "prefLabel" : {"_value" : "House of Lords"}
}
], "questionText" : "To ask Her Majesty\u2019s Government, further to the Written Answer by Earl Howe on 1 April (WA 178), whether they intend to issue a clarification of the differences between the figures for the number of babies born with mitochondrial disorders in their press releases on 28 June 2013 and 27 February 2014; whether the updated disease estimate for the United Kingdom based both on data from the 2011 census and observational epidemiological studies from the north-east of England is closer to their stated figure of one in 6,500 or one in 200; what was the corresponding frequency of children in either the north-east of England or the United Kingdom as a whole that were diagnosed with each of the mitochondrial diseases listed in Annex D of the consultation document entitled \"Mitochondrial Donation\" over the last ten years for which data are available; and how those figures compare to available data on population frequencies for mutations within the nuclear POLG1 and POLG2 genes.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/738", "label" : {"_value" : "Biography information for Lord Alton of Liverpool"}
}
, "tablingMemberPrinted" : [{"_value" : "Lord Alton of Liverpool"}
], "uin" : "HL854"}
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}