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Iewo 2ǒ#_ۺ(/u6duVTL06 z~慌,+y^ WghXۺoww@OKە=[Vt9F,|v<QV`BTe-Rn$QDY^AvViT_{nba>:4w%׺ǚs3rƻ@4{kG{?pMewFFH B==*PLhبd\d% Y/=Nv^r3gY˸ SQlh9So^>6KvO!q['=>ʴK˷+ev?|cٳ1gXerYGF\ܢǏ ljMǂBa?i]|7GnB¡!I O"}*#k]QЁ4fRS$}]5%Ȅ-p1"ԕ.9EF*q(TUߢ$LJ ! qSZ~b}FU@Eэ慖EnNIJ4jH炩JXgkI1Y 9RLɹ XTp;Obdtv4NX:Ӹ/(>;b˼\H{owTTɐac}GxQ]>>}X¿֤˛ň$VI^-*F8u7Г2b!bua$Τ}@9PbC= WO*/"m;b++db_9?qA#M_tM#2' ː[_hRl.߸XBӺDLdɷr-v~͝213XV^`Xłmy9S3$A[n7wWnŗC-YQv^ Aчܟ` IpͅKHǸ^#t^knUԟŲ,qev2:d …ڋvi"r.ޕgޡxdƎ`suL^ս,䴻Q8wM0o΅ _T?d X!UWK' lgy ʙ9/c,ۖElKn`=MP;# \hv#Ff5zsSDe%ESI1h|>-?]3;v/aPxq2\LK!Qfg1X8N`Q[;l+6@ʩH9|fny>*yrez*o9TL5VJ ?{IW#U>ZY%+ LL);~`-SXXZy'͓"bާ qeT o*I[ܛxG}Vۂv!"-D:7V@Hׅ^"џij*q(*OIuwv߸o?V_?/zm_[X'Q޾?e|VGzh}??GԿ8~Y?78%d?{_=foPKߋ*ea?u?_N>wK<)xqw!n>e'=8P4}?gn?gׇI7?N?oP&( T/ 00DTimesNew Romantti x: 0h DArialNew Romantti x: 0" DWingdingsRomantti x: 00DTimes New Romantti x: 0 C (}=> xfPD7n   @n?" dd@  @@`` r j  !K %" "  4- /.=  ** %    @S_b$n(p..")Dsqa9U$"$k;d}bm8^EB9U$R$SF*n3_ H Tg 0e0e     A@  A5% 8c8c     ?1 d0u0@Ty2 NP'p<'pA)BCD|E||S" fff@Dg4NdNdl x: 0ppp@  \ ʚ;~X8ʚ;G4BdBd x: 0<4!d!d@ 0ti <4dddd@ 0ti 0___PPT10 ppv___PPT9X/ 0z0&n@{? %O =JZ The PKU Registers Project Alison Munro Research Nurse Great Ormond Street Hospital [!: [    Registers History  Set up in 1964 with MRC funding 1994 funding transferred to DOH Reported incidents began to dwindle 1998 funding & reporting ceased 2002 UKNSPC became custodians  kThe Gaps& .    Audit of Children born between 1994-2005. Work in conjunction with Charles Scriver s  Out of Africa research. P*F " xr&M    Proposed Outline of Audit  s Step 1: Identify Children Screened Positive for PKU. Step 2: Collect data from PIMs . Step 3: Data Analysis. 9" ""  1   &T   x    n The Future   \ In 2006 we plan to ask the 2700 individuals on the register what to do with their data.  " xPY " xP " xP " xP " xP$Y      ] {  T " x " x " x  How ?  Gain MREC approval. Contact individuals through clinics and GP s. Full information packs to be distributed. Consent forms from patients. ( " f   Those lost ?  Given the strong assent this information holds we propose to employ Option 3 for individuals who cannot be traced. This is dependent on relevant ethical & legal approval. @s " f8 " f  News & Progress reports  NSPKU News & Views website. CLIMB S Newsletter. Professional Meetings. UKNSPC website. @W "  " Y Y When will I be contacted?  Lengthy process to gain Ethics approval. Full draft info sheets accompany this talk. Expect your information pack to be received in Autumn. Check NSPKU website for updates on progress. Full draft info sheets accompany this talk.Z   Questions?   Full contact details for the team undertaking the project are enclosed in the information pack. BUT please refrain from approaching the team until you receive your information pack through your clinician.(Zdj  Contact,  Alison Munro, Clinical Research Nurse. UK Newborn screening Programme Centre C/o Executive Offices Gt Ormond Street Hospital for Children NHS Trust London WC1N 3JH Tel: 0207 829 7883 Email: munroa@gosh.nhs.uk :ZZ(@d  Y   /a    0` ̙33` ` ff3333f` 333MMM` f` f` 3>?" dd@$?ldd@  f " @ ` n?" dd@   @@``PR    @ ` ` p>> QI(    60;  " P   X Click to edit Master title style!!   0=  "    k-Click to edit Master text styles Second level ! . `  s *f"\  c &A"`@ H  0޽h ? ̙33y___PPT10Y+D=' != @B + Default Design 0 `(    0 P     T*    0     V*  d  c $ ?pp    0 p @   RClick to edit Master text styles Second level Third level Fourth level Fifth level!    S   6x$ P   T*    6'    V*  H  0hԔ ? ̙3380___PPT10.9Z 0(`(    0! N3  ! `*     0d!  3 ! b*     6f! N  ! `*     6|!   ! b*   H  0hԔ ? ̙3380___PPT10.9  0L0 PA P$(   r  S t  9p   r  S W      H  0޽h ? ̙33___PPT10e.+D=' != @B +  0 pP$(  Pr P S X P   r P S 0   H P 0޽h ? ̙33m 0 0p(  p1 p Blq ?"  ABirth prevalence of PKU per year, based on UK PKU Register data @A@# #   B < p 3 A? H p 0޽h ? ̙33{ 0 +#Pl(  ll l Bl ?"IG  The UKNSPC began archiving the registers papers. Steering group formed to discuss the future. All parties positive the registers valuable research tool.$ l2    l < ?",\ Progress during 2004-2005&|0 xfP2    7nDH l 0޽h ? ̙33  0L0 z\J(  \x \ c $% @     \ c $Ёz)   &xDdH \ 0޽h ? ̙33y___PPT10Y+D=' != @B +  0 0h$(  hr h S z  P   r h S ,"   H h 0޽h ? ̙33 0L0 !(  x  c $P{      6|  P >  0   < ?" 4Why do we need to follow children born now with PKU?,5|8 xfP25 4   7nD   C rA,.1-3-5-1-4-2-1-3-2-1-0Anna with her children Madeleine (centre), who has PKU, and Isobel. Madeleine's PKU is managed successfully by diet and she excels at her school work.z   T?" 7gd QAnna with her children Madeleine (centre), who has PKU, and Isobel. Madeleine's PKU is managed successfully by diet and she excels at her school work. Photo: Anna Bailey http://www.sciencemuseum.org.uk/exhibitions/genes/228.asp>0M0M  H  0޽h ? ̙33___PPT10e.+D=' != @B +  0L0 xT(  xx x c $@     x c $2!   0|7nDdH x 0޽h ? ̙33y___PPT10Y+D=' != @B +%   0L0 $$'?#(    c $   P   &xDd" `D > #"*`D  +  < ?`DF>6___PPT9 i3"("    @`+  < ? `F>6___PPT9 i2"("    @`+  <0 ?'` F>6___PPT9 i1"("    @`0  <d" ?`'F>6___PPT9 nOption" "    @`&   <, ?DF>6___PPT9 d$("   @`&   <6 ? F>6___PPT9 d$("   @`2   <|@ ?' F>6___PPT9 p((" (   @`Q   <I ?'F>6___PPT9 'Receive invitations for future research"( " ( (  @`&   <8S ?f DF>6___PPT9 d$("   @`&  <U ? f F>6___PPT9 d$("   @`2  <`k?'f F>6___PPT9 p((" (   @`L  <dk?f 'F>6___PPT9 "Provide up to date contact details"# " # #  @`&  <?~Df F>6___PPT9 d$("   @`2  <X? ~f F>6___PPT9 p((" (   @`2  <+?'~ f F>6___PPT9 p((" (   @`d  <.?~'f F>6___PPT9 :Follow-up through NHS Central Register & Cancer registries"; " ; ;  @`2  < ?D~F>6___PPT9 p((" (   @`2  < ? ~F>6___PPT9 p((" (   @`2  < ?' ~F>6___PPT9 p((" (   @`B  <\ ?'~F>6___PPT9 Retain all existing data" "    @`2  <" ?DF>6___PPT9 p((" (   @`&  <+ ? F>6___PPT9 d$("   @`&  <0< ?' F>6___PPT9 d$("   @`?  <F ?'F>6___PPT9 }Remove name & address" "    @``B  0o ?`D`ZB  s *1 ?DZB  s *1 ?~D~ZB   s *1 ?f Df ZB ! s *1 ?D`B " 0o ?D`B # 0o ?`ZB $ s *1 ?'`'ZB % s *1 ? ` ZB & s *1 ?``B ' 0o ?D`DZB ( s *1 ?DH  0޽h ? ̙33y___PPT10Y+D=' != @B +  0 \$(  \r \ S   P   r \ S @     H \ 0޽h ? ̙33}  0  ($(  (r ( S   P   r ( S      H ( 0޽h ? ̙33___PPT10i._A!+D=' != @B +  0 0`$(  `r ` S $ P   r ` S X   H ` 0޽h ? ̙33  0 @x$(  xr x S G! P  ! r x S pH!  ! H x 0޽h ? ̙33  0 $(  r  S 8&! P  ! r  S  ,!  ! H  0޽h ? ̙33}  0  $$(  $r $ S pV! P   r $ S HW!  ! H $ 0޽h ? ̙33___PPT10i._]+D=' != @B + 0 + (  X  C pp     S $^p @    " H  0hԔ ? ̙33k 0 `2(  `^ ` S pp    ` c $ !p @ T  !<4___PPT9 First thing to do was to convert register to programme where data could be viewed and analysed. Approx. 1 month. Made some  codebooks  presenting all the variables and their distributions. With data converted, we set about assessing the completeness of notification and registration coverage since the registers were discontinued in 1998. We began with the PKU register, partly since notification has (in theory at least) been continuous since 1971. -  H ` 0hԔ ? ̙33Kn 0  |(  |^ | S pp   ! | c $!p @ T  !<4___PPT9 MLast check on completeness for PKU register was performed in 1979, when paediatricians were asked to send in all cases of PKU they had seen. After funding transferred from MRC to Department of Health in 1994, registration (demographic information from paediatricians) completeness fell. Doctors who had not sent back their forms were not followed up to the same extent. Funding ceased completely in May (?) 1998. Notifications of positive cases from labs became more sporadic. Can be seen on slide.-  H | 0hԔ ? ̙33x 0 ,(  ^  S pp   !  c $!p @   ! " H  0hԔ ? ̙33K{ 0  (  ^  S pp   !  c $a!p @ T  !<4___PPT9 MLast check on completeness for PKU register was performed in 1979, when paediatricians were asked to send in all cases of PKU they had seen. After funding transferred from MRC to Department of Health in 1994, registration (demographic information from paediatricians) completeness fell. Doctors who had not sent back their forms were not followed up to the same extent. Funding ceased completely in May (?) 1998. Notifications of positive cases from labs became more sporadic. Can be seen on slide.-  H  0hԔ ? ̙33r8"4T .aX&GCۅ|Oŋ G9R 5y~c; Iw{P?EO=}OOh+'0T hp  No Slide TitleDavid SmithsonDavid Stening199Microsoft PowerPoint@ ޣ@@ x^WGSg  )'    """)))UUUMMMBBB999|PP3f333f3333f3ffffff3f̙3ff333f333333333f33333333f33f3ff3f3f3f3333f33̙33333f333333f3333f3ffffff3f33ff3f3f3f3fff3ffffffffff3ffff̙fff3fffff3fff333f3f3ff3ff33f̙̙3̙ff̙̙̙3f̙3f333f3333f3ffffff3f̙3f3f3f333f3333f3ffffff3f̙3f3ffffffffff!___wwwff4'A x(xKʦ """)))UUUMMMBBB999|PP3f3333f333ff3fffff3f3f̙f3333f3333333333f3333333f3f33ff3f3f3f3333f3333333f3̙33333f333ff3ffffff3f33f3ff3f3f3ffff3fffffffff3fffffff3f̙ffff3ff333f3ff33fff33f3ff̙3f3f3333f333ff3fffff̙̙3̙f̙̙̙3f̙3f3f3333f333ff3fffff3f3f̙3ffffffffff!___wwwۺۻ