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@=p_y-~b7Ta} ExXMh\U>o慙 N~Vu ӂ$IҦ*Zk Tر(tV.HࢋN(j@q E5Λs_O_ޛyssws-": y2ٗ$`^&ZF91Nd޵D A"~ hS$aA0f CX=ip)Ȥ+t QS^(&qm/Wnɯ d]{(=/f{Ew]ֈ'x^HwV)ϴs@^D?s>MjQzg%~;O?uCT>̼㵽R:A399"}%J8Sk^p5ϛlsqMO;KpF}>N?zK^G F8!K'o\='.9Dz]rc&tu-DܡW| Ec2ǔ1ircEa2kfa2Ԟ@J[ƨy,,q?{ힽfE_^^at~Ŭ`+Sȼo7XGѹ^s+H{ai߮?FXrݐW>;=Gc.Uo < S>c6)+ԥT؜VV&7r™SOE|ϑOn=~%:os(xGgSvK[)Qjp],ɈVa\>q|CoHwX9wxby݂,ϙ/tNq9ό*7r[ 3.m|_ld2q FWw5qaϊ ԹUag??W3Ų"wrl轇{cpW1s+*f"OX~bp7*Yv!d5s~l Soa)VqT8<*v}gC,ɛdumr.G%%ʇAy 56{ mU>  ()    HG   **       "  **21// ..5 HH,,>>  ()   HG     _"$QvmPkTR$pxJ# mG"$WAak vEgVP$"$p_y-~b7X 0AA@8:;wg4GdGdk x: 0|ppp@  <4BdBd@ 0t\ʚ;ʚ;<4dddd@U 0@80___PPT10 pp?  %@The Untreated PKU Trial|Lesley Robertson Research Dietitian The National Hospital for Neurology and Neurosurgery University College London Hospitals$}P$YMy Talk Today  W Introduction and background to project Summary of progress on the project Results XXB9Wellcome Trust GrantFunded 3 year study  to assess the effect of low phenylalanine diet in 36 adults with previously untreated PKU Two full time researchers :- psychologist and dietitian Allayne Amos and myself started on the project in Summer 2003 Support from PKU LDRG, NSPKU and SHS fqPPP)P@PPTPN@7Research Protocol>A double-blind placebo crossover trial to assess the efficacy of phenylalanine restriction in 36 adults previously untreated PKU Length of trial - 60 weeks split into 4 sections  including a trial of a PKU and a normal diet Behaviour will be monitored throughout each phase each phase  #Inclusion CriteriaAdults with PKU but never treated by diet Severe learning disability Presence of challenging behaviour Plasma phenylalanine above 1200 mol/L Consent from carer and or family LkZZJZC# #2.Research Protocol DiagramA E< Monitoring tBlood tests  weekly finger pricks Behaviour monitoring Daily behaviour diary 2 standardised questionnaires at each of five visits 3 short video s of each participant at the five visits *88%!Dietary ManagementNormal care home diet eaten during the baseline and washout Food in phase 1 and 2 will be low phenylalanine Amino acid supplement will make the difference in two phases On active diet (PKU diet) XP Maxamum will be given On placebo diet (non PKU diet) the amino acid supplement will contain phenylalanine  P Maxamum E0P-EDietary EducationCare home staff Day centre staff Family and friends Local health care teams  primary and secondary ii<3What we have we discovered ?Statistics led us to believe there could be 1500  1800 people living in the UK with untreated PKU To date we have found 157 adults  living predominately in care homes for people with learning disability Have recruited 36 people on to the trialZ3/+What have we found in 157 adults identified,,702Social care needs of adults suitable for the trial3381Medical SymptomsC:National studyC 92&The 36 Adults enrolled onto the trial '%2 in the baseline 6 on diet 1 2 washout 7 on diet 2 7 completed trial  5 remain on PKU diet 6 withdrawn during baseline 5 withdrawn during diet 1 or diet 2 1 withdrawn as failed to meet study criteria =4Reasons for withdrawing 1 withdrew in the baseline level below 1200 6 withdrew in the baseline 3 unable to do blood tests 3 unable to take amino acid drink 5 withdrew in diet 1/diet2 4 client refused diet  AA supp dislike 1 carers decide PKU diet unacceptableZZZ=ZZNZ=N  >5ResultsLast adult started baseline on 22nd November They will complete trial by March 2007 Researchers will then become unblinded Analyse the data and disseminate results Publish towards end 2007 <! q E?6SummaryDifficult to find adults with previously untreated PKU From the 157 we have found  many have social and medical problems Many carers are unconvinced by the potential benefits of a PKU diet Diet does not suit everyone   0` ̙3ff3ff` ff723f` ___WW-|` 3U33ff` f3f` ff33fCK` S vi3f3` LLff3ff` QVV3Y` .]\̙̙B>?" dd@!?lFd@ "   @ `  n?" dd@   @@``PT !   @ ` `)p>> ` X(  X X 6&  "P    T Click to edit Master title style! !$ X 0Y  "   RClick to edit Master text styles Second level Third level Fourth level Fifth level!     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Neurosurgery.-@BComic Sans MS-. <2 ])#University College London Hospitals .-՜.+,0     On-screen ShowUniversity of KentKy Arial Arial BlackTimes New Roman WingdingsComic Sans MSVerdanaStudioMicrosoft Graph ChartThe Untreated PKU TrialMy Talk Today Wellcome Trust GrantResearch ProtocolInclusion CriteriaResearch Protocol Diagram MonitoringDietary ManagementDietary EducationWhat we have we discovered ?,What have we found in 157 adults identified3Social care needs of adults suitable for the trialMedical SymptomsNational study'The 36 Adults enrolled onto the trial Reasons for withdrawingResultsSummary  Fonts UsedDesign TemplateEmbedded OLE Servers Slide Titles%_Z5 0David SteningDavid Stening  !"#$%&'()*+,-.0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~Root EntrydO)Pictures]Current UserSummaryInformation(PowerPoint Document(/~5DocumentSummaryInformation8