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Psychological studies in huntingtons dis

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Psychological studies in huntingtons dis

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Psychological studies in huntingtons dis c dystrophy: genetic counselling approachesSiv Fokstucn, Jenny Myring, Christine Evans, Peter s HarperJ Mei Crenc: 200138:846 850Institute of Medic 11

1 Genetics, University ofWales College ofMedicine, Heath Park, Cardiff, CI-4 4X.N, UK s Fokuucn*JMjnnt c Evans PS Harperc axTopoodenue to: Ptnfewc Har Psychological studies in huntingtons dis

per, hu|X3pxii uudiirac.uk•Present address: Dmsion of Mcd>úd Gcnetlix Centre .Mcd».*ic UnKvnuUoc. I Rue Mkbd-Secvet, 1211 Geneva 4, Sntueriuxl, MV Jti

Psychological studies in huntingtons dis

kstucniihluẹe.ihEditor—We report the genetic counselling approaches used in a scries of 72 presympto-matic genetic tests for myotonic dystrophy undert

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Psychological studies in huntingtons dis is for further, more systematic research.Genetic counselling in myotonic dystrophy has always been difficult and complex, owing to the extreme variabi

lity of the disorder, in both severity and age at onset, with anticipation between generations and influence of the sex of the affected parent.Ihc ide Psychological studies in huntingtons dis

ntification of a CTG repeat expansion within the 3' untranslated region of the myotonic dystrophy protein kinase gene on chromosome 19‘ as the primary

Psychological studies in huntingtons dis

molecular defect has transformed our understanding of the genetic aspects of this disorder and provides the basis for an accurate and specific diagno

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Psychological studies in huntingtons dis ed degree of prognosis to be given to those found to have the mutation, particularly for very large or minimal gene expansions. Subjects carrying a mi

nimal expansion (less than 100 repeats) usually show few or no muscle symptoms,2 but may develop cataract in later life; they conuibute to a pool of m Psychological studies in huntingtons dis

utation carriers who may transmit clinically significant disease to their offspring as a result of anticipation.Presymptomatic genetic testing for lat

Psychological studies in huntingtons dis

e onset dominantly inherited disorders first became possible for Huntington's disease (HD),’ for which extensive experience has resulted in widely acc

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Psychological studies in huntingtons dis t.' With appropriate adaptation, this has become a model for other late onset genetic disorders of the nervousTibìe I PKiympVMMÚc lejiing for myoumic

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nl SI rvlMkci tu ponililr tewtinp Ilf ixigúíng prcfpuiiiv550(C) Toting «1 aayinpfeMiulk iKircnl ■ inveóp>ú»n of child;i xvỈAtxci til936ToolT2so10syste

Psychological studies in huntingtons dis

m and to some extent also for the familial cancers. Although direct presymptomatic testing for myotonic dystrophy his now been available for eight yea

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Psychological studies in huntingtons dis prompted the present study, in conjunction with experience of direct molecular testing as a service in our centre, reported separately.'Patients and

methodsSince die identification of the specific gene mutation in 1992, up to June 2000, out of a total of 287 molecular analyses for the disorder in s Psychological studies in huntingtons dis

ubjects living in Wales (population 2.9 million), there were 78 presymptomaũc tests for myotonic dystrophy; by comparison 205 diagnostic tests on symp

Psychological studies in huntingtons dis

tomatic subjects were performed and four prenatal tests. Ihc laboratory methods used and the overall composition and outcomes of the series are descri

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Psychological studies in huntingtons dis clinical geneticists providing the clinical genetics service for Wales over this eight year period, based in the Institute of Medical Genetics, Cardif

f, the remaining six samples having been received from neurologists and pacdiaưicians. Data about the counselling approach were ascertained through th Psychological studies in huntingtons dis

e clinical genetics service notes and correspondence, supplemented by further discussion with the relevant clinical geneticist. We did not recontact a

Psychological studies in huntingtons dis

ny patients.No single or specific counselling approach to prcsymptomatic testing in myotonic dystrophy has been advocated in Wales over this period, t

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Psychological studies in huntingtons dis were seen in their local medical genetics clinic by the clinical geneticist and genetics nurse specialist with designated responsibility for the parti

cular district, not in a specialist clinic for die disorder.ResultsWhen grouped according to the perspective of the subject tested, three different pr Psychological studies in huntingtons dis

esympto-matic test situations could be distinguished (table 1). Ihc largest group of subjects (A, n=58) represented the classical presympto-matic test

Psychological studies in huntingtons dis

situation with persons at 50% risk.wwwjmedgew r.Downloaded from jmg.bmj com on July 15, 2011 - Published bygroup.bmj.c https'//khothu viên cornLearnT

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

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Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

Downloaded from jmg.bmj com on Ally 15, 2011 - Published by groyp.bmj.c https7/khothuvi6n comMoLetters to the EditorPresymptomatic testing in myotonic

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