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171143
registered interest false more like this
date less than 2014-12-17more like thismore than 2014-12-17
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Hereditary Diseases remove filter
house id 1 more like this
legislature
25259
pref label House of Commons more like this
question text 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. more like this
tabling member constituency Barnsley Central more like this
tabling member printed
Dan Jarvis more like this
uin 219149 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2015-01-05more like thismore than 2015-01-05
answer text <p>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> </p> more like this
answering member constituency Battersea more like this
answering member printed Jane Ellison more like this
question first answered
less than 2015-01-05T16:21:42.08Zmore like thismore than 2015-01-05T16:21:42.08Z
answering member
3918
label Biography information for Jane Ellison more like this
tabling member
4243
label Biography information for Dan Jarvis more like this
99863
registered interest false more like this
date less than 2014-10-20more like thismore than 2014-10-20
answering body
Cabinet Office more like this
answering dept id 53 more like this
answering dept short name Cabinet Office more like this
answering dept sort name Cabinet Office more like this
hansard heading Hereditary Diseases remove filter
house id 1 more like this
legislature
25259
pref label House of Commons more like this
question text 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. more like this
tabling member constituency Pendle more like this
tabling member printed
Andrew Stephenson more like this
uin 211015 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-10-23more like thismore than 2014-10-23
answer text <p>The information requested falls within the responsibility of the UK Statistics Authority. I have asked the Authority to reply.</p><p> </p> more like this
answering member constituency Reading East more like this
answering member printed Mr Rob Wilson more like this
question first answered
less than 2014-10-23T15:48:38.3349681Zmore like thismore than 2014-10-23T15:48:38.3349681Z
answering member
1556
label Biography information for Mr Rob Wilson more like this
attachment
1
file name PQ 211015 ONS 359.pdf more like this
title ONS Letter to Member - Infant Deaths more like this
tabling member
4044
label Biography information for Andrew Stephenson more like this
91630
registered interest false more like this
date less than 2014-09-11more like thismore than 2014-09-11
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Hereditary Diseases remove filter
house id 1 more like this
legislature
25259
pref label House of Commons more like this
question text 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. more like this
tabling member constituency Stoke-on-Trent South more like this
tabling member printed
Robert Flello more like this
uin 209135 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-10-13more like thismore than 2014-10-13
answer text <p>The Government’s 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> </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> </p> more like this
answering member constituency Mid Norfolk more like this
answering member printed George Freeman more like this
question first answered
less than 2014-10-13T14:19:49.5212012Zmore like thismore than 2014-10-13T14:19:49.5212012Z
answering member
4020
label Biography information for George Freeman more like this
tabling member
1569
label Biography information for Robert Flello more like this
65927
registered interest false more like this
date less than 2014-07-07more like thismore than 2014-07-07
answering body
Department of Health more like this
answering dept id 17 more like this
answering dept short name Health more like this
answering dept sort name Health more like this
hansard heading Hereditary Diseases remove filter
house id 2 more like this
legislature
25277
pref label House of Lords more like this
question text To ask Her Majesty’s 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. more like this
tabling member printed
Lord Alton of Liverpool more like this
uin HL854 more like this
answer
answer
is ministerial correction false more like this
date of answer less than 2014-07-21more like thismore than 2014-07-21
answer text <p>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> </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> </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> </p><p>The table of disorders caused by unhealthy mtDNA attached as Annex D in the consultation document ‘Mitochondrial Donation’ 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>
answering member printed Earl Howe more like this
question first answered
less than 2014-07-21T16:51:16.5940121Zmore like thismore than 2014-07-21T16:51:16.5940121Z
answering member
2000
label Biography information for Earl Howe more like this
tabling member
738
label Biography information for Lord Alton of Liverpool more like this