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"#  '(*)"$`~b^=Zc#R$pxJ# mG$"$>~ $mMrL$"$^h+rFjlU$$$$"$RHw׌͗] 0AA0 3f@8FGg4HdHd 08ppp@  <4BdBd8c20loO ʚ;[)e8ʚ;<4dddd8108<4!d!d810880___PPT10 pp?  %6sJA randomised control trial of diet in adults with previously untreated PKUKK(}Lesley Robertson Research Dietitian The National Hospital for Neurology and Neurosurgery University College London Hospitals .~P$Yu&PKU Learning Disability Research Group''(Formed 1999 Designed the protocol and secured funding for the study Members of the Steering Group : Dr Philip Lee Professor Glynis Murphy Dr Brian Fitzgerald Eleanor Weetch Rosemary Hoskin Maggie Lilburn Pat Portnoi Carole Coleman &dZZOutline of presentation Katie s story Finding participants Background and summary to the project Outcome of the 36 participants Blood results Behaviour results Summary Story of Janet, a lady who participated in the trial ZTJWhat we have discovered ?Statistics led us to believe there could be 1500  1800 people living in the UK with untreated PKU To date, we have found 157 adults  living predominately in care homes for people with learning disability We recruited 36 people onto the trialp#Barriers to locating and recruiting$$jPeople s medical notes don t follow them around  staff unaware of diagnosis Staff  social care and local medical teams suspicious of research Either to give initial info when locating Consent to be part of trial Care staff unable to accept PKU diet, feel cruel,  I couldn t cut out meat, why should they HZGZ_ZG_aT(Charactersitics of 157 adults identified))bU2Social care needs of adults suitable for the trial33cVMedical SymptomsiWellcome Trust GrantrFunded 3 year study  to assess the effect of low phenylalanine diet in 36 previously untreated adults Two full time researchers :- psychologist and dietitian Researchers started on the project in Summer 2003 Support from NSPKU SHS Steering Group ZZ(Z@ZMZ@M XPNational studyC$ qInclusion CriteriaAdults with PKU but never treated by diet Severe learning disability Presence of challenging behaviour Plasma phenylalanine > 1200 mol/L Consent from carer and or family LkZZFZC# #gResearch ProtocolA 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 non-PKU diet Behaviour monitored throughout each phase 2.Research Protocol DiagramA hDietary ManagementXNormal care home diet eaten during the baseline and washout Food in diet 1 and 2 was low phenylalanine Amino acid supplement - the difference in two phases On active diet (PKU diet) XP Maxamum given On placebo diet (non PKU diet) the amino acid supplement contained phenylalanine  P Maxamum -0Z--E<@Monitoring  blood and behaviour!!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 *88mY&The 36 Adults enrolled onto the trial '% 17 completed full 60 weeks 9 remain on PKU diet 8 on returned to normal diet 3 withdrew on diet 2(following deterioration of behaviour) to follow PKU diet 7 withdrew during baseline 4 unable to do bloods 3 disliked amino acid supplement 5 withdrew during diet 1  all unable to take amino acid supplement 3 withdrew at carers request on diet 2 1 withdrawn as failed to meet study criteria P2PiP7PP2;7}Blood Phenylalanine}eBehaviour MonitoringWDaily behaviour diary 3 positive behaviours 3 negative behaviours Carers comments Standardised questionnaires Vineland Adaptive Behaviour Scales (VABS) Aberrant Behaviour Checklist (ABC) Video of 3 situations At mealtime, doing puzzles, on own Measured time spent (in seconds) on challenging behaviour, concentration on task, and communicationZ<ZZMZZZ<M  o[Daily Behaviour DiariesE 3 positive behaviours - standardised for everyone Concentration Social responsiveness Communication 3 Negative behaviours- individualised Screaming, shouting Aggression - grabbing, hitting, punching Invading space Self harm Smearing and/or stripping Agitation Hitting/banging doors or throwing things Carers comments4P3PP&PPP43&  ~@Behaviour Analysis  daily diary!!FDaily behaviour diary No correlation between Phe level and negative behaviours No correlation between Phe level and positive behaviours No correlation between negative behaviours and positive behaviours Very positive carer comments - 250 were analysed and statistically significant  0.001 ZZZWZZ*A|W  ,.6~fCarers commentsZWe have some clear descriptions of clients changed behaviour Intensity of negative behaviour decreases Length of negative behaviour deceases Receptive to others and aware of others feelings  allowing staff to work on improving negative behaviour Communication becomes clearer and more concise The participants often been undertaking behaviour for many years  time is needed to see marked benefit and undo learned behaviour H?ZZZ?k Carer commentl Carer commentm Carer commentn Carer commentjStandardised QuestionnairespNo significant difference between active and placebo on either Vineland Adaptive Behaviour Scales (VABS) Aberrant Behaviour Checklist (ABC) Need a more sensitive tool Katie s story V@M*@M*|dVideo data collected at visitsNo differences between phases  i.e. between Normal diet, Active diet or Placebo diet: Observed instances of challenging behaviour Time concentrating during meal or on task Observed gestures, repetitive speech and conversation Interest and success doing puzzles BYZZZY]SSummarysDifficult to find adults with previously untreated PKU 36 people recruited to the trial Blood results of 17 completers BL 1582 mol/L PKU diet 572 mol/L WO 1520 mol/L Non PKU diet 1474mol/L Carers comments most powerful evidence when analysing behaviour From the 17 completers and the 3 who withdrew early to follow PKU diet, 60% are still on diet fwP]PPPw]WM Thank You  To Jan and Carolyne Care Homes Steering Group NSPKU SHS My colleagues at Charles Dent Metabolic Unit, The National Hospital for Neurology and Neurosurgery, University College London HospitalsP /sn 0` 33PP` 13` 3333` Q_{` 333fpKNāvI` j@v۩ῑ΂H>?" dd@,?n<d@ `7 `2@`7``2 n?" dd@   @@``PR    @ ` ` p>>    & (    <& F 0   Ng"P F 0   <F"p F 0   C xDY?d?"bUv F 0    < #" `   T Click to edit Master title style! !$   0 "   RClick to edit Master text styles Second level Third level Fourth level Fifth level!     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M+0FD ' = @B D ' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*+p+0+0 ++0+0 + 0N0 y(  ~  s *-     F p    0h/  tBaseline (8 weeks)*0   ZB  s *Do` ` ZB  s *Do ` ZB  s *Do` `   0 6 p a ^PKU Diet 0 2     0:   b Non PKU diet 0 2      0spa b Non PKU diet 0 2      0${ @  ^PKU Diet 0 2     0O _Visit 1 0 2    0@R _Visit 5 0 2  B 0 _Visit 2 0 2  B 0Z  _Visit 3 0 2  B 0\T  _Visit 4 0 2 `B  0D) `B  0D) P p`B  0D)@P @p`B  0D)@P @p`B  0D)@P @p  08_@  uDiet One (24 weeks)*0     0`  uDiet Two (24 weeks)*0     6>iP JA  `Wash-out 0 2  TB  c $D`  TB  c $D TB  c $D @ 0 TB  c $D @ 0 H  0޽h ? ̙3ff3ffy___PPT10Y+D=' = @B + 0 (    s *  <$0     c $ 9 <$0  H  0޽h ? +T3f3f___PPT10..ٖ-+0FD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*>%(D' =-o6Bdissolve*<3<*>D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*>k%(D' =-o6Bdissolve*<3<*>kD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*k%(D' =-o6Bdissolve*<3<*kD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*-%(D' =-o6Bdissolve*<3<*-+p+0+0 ++0+0 + 0  (    s *  <$0     s *  <$0  H  0޽h ? f3f___PPT10..?<0+0FD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*#%(D' =-o6Bdissolve*<3<*#D ' =%(Dp ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*#8%(D' =-o6Bdissolve*<3<*#8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8N%(D' =-o6Bdissolve*<3<*8ND@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*N%(D' =-o6Bdissolve*<3<*ND@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*+p+0+0 ++0+0 +R" 0N0 00(  0 0 s *F  <$0    0 s *G  <$0  H 0 0޽h ? +T3f3f___PPT10..@G+-VD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0%(D' =-o6Bdissolve*<3<*0D' =%(D(' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0%(D' =-o6Bdissolve*<3<*0D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*00%(D' =-o6Bdissolve*<3<*00D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*00M%(D' =-o6Bdissolve*<3<*00MD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0M%(D' =-o6Bdissolve*<3<*0MD' =%(D(' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0%(D' =-o6Bdissolve*<3<*0D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0%(D' =-o6Bdissolve*<3<*0D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0%(D' =-o6Bdissolve*<3<*0D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*01%(D' =-o6Bdissolve*<3<*01D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*01X%(D' =-o6Bdissolve*<3<*01XD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*0X%(D' =-o6Bdissolve*<3<*0X+p+0+00 ++0+00 +d 0 pd(  x  c $8      0  `A  ? ?      H  0޽h ? 333380___PPT10.s`~  0 Px|(  x x S   <$0    x S   <$0  H x 0޽h ? 3333___PPT10..+-VD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x%(D' =-o6Bdissolve*<3<*xD ' =%(Dp ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x%(D' =-o6Bdissolve*<3<*xD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x,%(D' =-o6Bdissolve*<3<*x,D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x,B%(D' =-o6Bdissolve*<3<*x,BD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*xBR%(D' =-o6Bdissolve*<3<*xBRD' =%(D(' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*xRn%(D' =-o6Bdissolve*<3<*xRnD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*xn%(D' =-o6Bdissolve*<3<*xnD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x%(D' =-o6Bdissolve*<3<*xD' =%(D(' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x%(D' =-o6Bdissolve*<3<*xD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*x%(D' =-o6Bdissolve*<3<*xD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*xX%(D' =-o6Bdissolve*<3<*xX+p+0+x0 ++0+x0 +>) 0 `8(  8 8 c $ܕ  <$0    8 c $ܖ 7 <$0  H 8 0޽h ? 3333&&___PPT10&..߭-+-VD&' = @B D%' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D ' =%(D ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*84%(D' =-o6Bdissolve*<3<*84D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*84B%(D' =-o6Bdissolve*<3<*84BD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8BX%(D' =-o6Bdissolve*<3<*8BXD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8Xg%(D' =-o6Bdissolve*<3<*8XgD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8gj%(D' =-o6Bdissolve*<3<*8gjD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8j%(D' =-o6Bdissolve*<3<*8jD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8 %(D' =-o6Bdissolve*<3<*8 D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8 5%(D' =-o6Bdissolve*<3<*8 5D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*86F%(D' =-o6Bdissolve*<3<*86F+p+0+80 ++0+80 + 0 (    c $p}  <$0     c $p~  <$0  H  0޽h ? 3333NF___PPT10&..p+-VD~' = @B D9' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*DX' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%%(D' =-o6Bdissolve*<3<*%D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%P%(D' =-o6Bdissolve*<3<*%PD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*P%(D' =-o6Bdissolve*<3<*PD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*#%(D' =-o6Bdissolve*<3<*#+p+0+0 ++0+0 +B 0 ||(  | | S   <$0    | S    <$0  H | 0޽h ? 3333___PPT10.. ݉+-VD.' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|%(D' =-o6Bdissolve*<3<*|D ' =%(D ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|?%(D' =-o6Bdissolve*<3<*|?D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|?i%(D' =-o6Bdissolve*<3<*|?iD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|i%(D' =-o6Bdissolve*<3<*|iD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|%(D' =-o6Bdissolve*<3<*|D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|*%(D' =-o6Bdissolve*<3<*|*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*|*%(D' =-o6Bdissolve*<3<*|*+p+0+|0 ++0+|0 +; 0 RJ(  x  c $F     *  s *pN 0  x She s more willing to try new things, and we can interact more with her. If she doesn t like it, she doesn t dig her fingernails in  just holds her hand away. Stays in the bath  very chilled, no screaming: before, staff had to stay in bathroom with her. Will spend time in kitchen watching what you are doing. When out in the community, used to need a wheelchair  now she walks. In June, we had to wait in hospital to see the consultant and she waited quietly for quite a long time. Neurologist wired her up and she was OK  before she would not let doctors near her. $=Z<H  0޽h ? 3333___PPT10i. ӵ+D=' = @B +7 0 NF(  x  c $c     &  s *pe   @ He went round supermarket with a shopping basket. Took great pains to choose shampoo  same colour as his bedroom. New activity  colouring/scribbling, folding laundry: towels folded and put away (if shown where). Fully involved in bed-making, rather than just watching. If prompted, will clear away other people s plates. More patience with game playing  quoits especially  will take turns. Uses tissue to blow own nose. Involved with others, participates. Allows another resident to hold his hand. Shares sweets. Goes on van trips now with others. Into pubs. If he wanted a drink, before would take you to cup, now also teabag, open cupboard, pointing to supplement. XP xH  0޽h ? 3333___PPT10i.@J+D=' = @B + 0 (  x  c $P       s *   t4 One day last week, she took her pills out of her day-centre bag  unzipped it!  and put them on the window sill in the kitchen (not done before). Last night carer was really tired and wanted to go to bed, but she remade the bed and put the light on (i.e. stopped her from going to bed). Last weekend she didn t want to be outside (in covered area by front door) and took carer by hand and led her back indoors/upstairs. Took her coat off by herself. She is calmer, to extent that they don t need 2 staff members with her always now (though still 2 at meals). Mimicked carer (stroking hair). Fun/playful. Relaxed, eye contact. Put extra cup out for staff s coffee. $PH  0޽h ? 3333___PPT10i.DQC+D=' = @B +  0 N(  x  c $       s * p  $ More independent  will ask for something he wants. We were going to visit his mum  he put on his own shoes, got his coat and stood by the  going out door. Will go in the garden on his own, going through 2 doors. Will take staff s hand to go down to the bathroom/bedroom. In last 3 weeks, has taken off his pad for 3-4 hours, will sit in kitchen, gets up and goes to toilet  bowels and wee  independently or asks staff. Moves around of own volition, in control  not needing prompting from staff as before. He decides where he goes and doesn t stay put (as before)  moves between bathroom, kitchen, dining room, his room and outside. If he wants curtains closed, he does it or he asks staff (moves your hand towards curtains  very clear. To go out, got shoes, pulled me to wardrobe). Seems to understand what options are, that can do when he wants and what consequences are. $sPrH  0޽h ? 3333___PPT10i.xB+D=' = @B + 0 |(    S   <$0     S   <$0  H  0޽h ? 3333f^___PPT10>..,+-VD' = @B DQ' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D(' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*@%(D' =-o6Bdissolve*<3<*@D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*@j%(D' =-o6Bdissolve*<3<*@jD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*j%(D' =-o6Bdissolve*<3<*jD' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*+p+0+0 ++0+0 +V 0 p(  p p c $4  <$0    p c $4  <$0  H p 0޽h ? 3333___PPT10..n+-VD6' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*p%(D' =-o6Bdissolve*<3<*pD ' =%(D ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*pY%(D' =-o6Bdissolve*<3<*pYD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*pY%(D' =-o6Bdissolve*<3<*pYD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*p%(D' =-o6Bdissolve*<3<*pD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*p%(D' =-o6Bdissolve*<3<*pD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*p%(D' =-o6Bdissolve*<3<*p+p+0+p0 ++0+p0 +* 0 |(    S X  <$0     S X  <$0  H  0޽h ? 3333___PPT10..2+0FD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*7%(D' =-o6Bdissolve*<3<*7D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*7X%(D' =-o6Bdissolve*<3<*7XD ' =%(D ' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*Xw%(D' =-o6Bdissolve*<3<*XwD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*w%(D' =-o6Bdissolve*<3<*wD@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*s%(D' =-o6Bdissolve*<3<*s+p+0+0 ++0+0 + 0 (    c $  <$0     c $_  <$0  H  0޽h ? 3333___PPT10.. 2+0FD' = @B D' = @BA?%,( < +O%,( < +D' =%(%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*%(D' =-o6Bdissolve*<3<*D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*.%(D' =-o6Bdissolve*<3<*.D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*.4%(D' =-o6Bdissolve*<3<*.4D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*48%(D' =-o6Bdissolve*<3<*48D' =%(D' =%(D@' =A@BB BB0B%(D' =1:Bvisible*o3>+B#style.visibility<*8%(D' =-o6Bdissolve*<3<*8+p+0+0 ++0+0 +I[0 0@Y(  @d @ c $<@x    @ s * <     C/Here are some of the negative behaviours chosenH @ 0gV ? 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"2 Q6Research Dietitian.-@BComic Sans MS-. U2 V4The National Hospital for Neurology and Neurosurgery.-@BComic Sans MS-. <2 [.#University College London Hospitals.-՜.+,0     On-screen ShowUniversity of KentL %ArialTahoma WingdingsComic Sans MSVerdanaTimes New RomanBlendsMicrosoft Graph ChartKA randomised control trial of diet in adults with previously untreated PKU'PKU Learning Disability Research GroupOutline of presentation What we have discovered ?$Barriers to locating and recruiting)Charactersitics of 157 adults identified3Social care needs of adults suitable for the trialMedical SymptomsWellcome Trust GrantNational studyInclusion CriteriaResearch ProtocolResearch Protocol DiagramDietary Management!Monitoring blood and behaviour'The 36 Adults enrolled onto the trial Blood PhenylalanineBehaviour MonitoringDaily Behaviour Diaries!Behaviour Analysis daily diaryCarers commentsCarer commentCarer commentCarer commentCarer commentStandardised QuestionnairesVideo data collected at visitsSummary Thank You  Fonts UsedDesign TemplateEmbedded OLE Servers Slide Titles_:SteningStening  !"#$%&'()*+,-./012456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~      !"#$%&'()*+,-./0123456789:;<=>?@ABCDEFGHIJKLMNOPQRSTUVWXYZ[\]^_`abcdefghijklmnopqrstuvwxyz{|}~Root EntrydO)PicturesdCurrent UserSummaryInformation(3PowerPoint Document(3^DocumentSummaryInformation8