ࡱ> LNKq` bjbjqPqP 4::          @       )@+@+@+@+@+@+@$6BhDO@   O@    d@       )@ )@     uq9W . )@z@0@ hE phE  "hE 9 5 Zd@ 4   O@O@ "   @   $D   D          Latest Update from Liz Jacklin - NPDG (UK) Clinical Research Nurse Lysosmal Storage Disorders - A Research Study As many of you are already aware, Niemann-Pick diseases are part of a group of disorders called Lysosomal Storage Disorders. This Study aims to understand the natural history, effectiveness and cost effectiveness of current and emerging treatments for those affected by a Lysosomal Storage Disorder (LSD) and their families. The Study is being funded by the Health Technology Assessment Programme, which is part of the Department of Health. The consultants at each of the NCG centres are co-investigators on the Study. Shortly, you will receive an information sheet about the Study in the post, and when you attend your clinic appointment, you will be asked to give your consent to participate in this Study. There are two parts to the Study, the first part looks at the quality of life of patients with LSDs, and the second collects clinical data on the natural history of LSDs. You are free to decide whether or not you wish to participate in this Study; if you choose not to participate your clinical care will not be affected in any way. You can consent to participate in the full study; if you choose to do this, you will be asked to complete a number of quality of life questionnaires. There will be no additional tests or samples required. A research nurse or analyst will be on hand to help you with the questionnaires although she will not be able to influence your answers. The research nurse or analyst will then use your clinic notes to obtain clinical information for the natural history part of the Study. If you do not wish to participate in the full Study, you can consent to be part of the natural history Study only, in which case you will not fill out any questionnaires but the research nurse/analyst will still be able to collect clinical information from your clinic notes. The Niemann-Pick Disease Group (UK),Jackie Imrie, and myself, are in regular contact with the Study designers so please do contact us if you have any questions about the Study. At the moment, only those affected by Niemann-Pick Type C will be contacted, but we expect that the Study will soon be opened up to Niemann-Pick Type B patients. Curcumin As many of you may be aware, the use of the naturally occurring substance Curcumin (Tumeric) is currently a hot topic of debate in NPC. Some families in America are using the substance as a drug and are treating their children with it. This has led many others to ask if they should be doing the same. There have been no clinical trials using curcumin in NPC carried out in humans. It is therefore not possible to assess the effects or side effects associated with it. As with all therapies our advice would be to look very carefully at the evidence and to discuss this with your clinician before making any decisions. As always if you would like to discuss these or any other issues relating to Niemann-Pick Disease with me then I would be very happy to hear from you. Elizabeth Jacklin - Clinical Research Nurse Niemann-Pick Disease Email  HYPERLINK "mailto:elizabethjacklin@cmmc.nhs.uk" elizabethjacklin@cmmc.nhs.uk tel/fax 0161 922 2967 Cr ( ) %&9UWXYֹ֣|h|V|*B*ph CDrST   00000000000000000   K00 $I00 I0 K00Y   % X u X{({ @{@{  A{LA{ A''q q ))x x V*urn:schemas-microsoft-com:office:smarttagsplacehttp://www.5iantlavalamp.com/_*urn:schemas-microsoft-com:office:smarttagscountry-regionhttp://www.5iantlavalamp.com/ DL" * , 3 / 7 % v z   334 5 [ \ % & B C % v @DgFfN`Dh;jqq  !!,x.B5?iLP6Sg/r{ (%I)')FF_[_ost+x_ 9?KDLT{_cxu Q$Y)0u=)IJR\.o|-45QT6X] eYgn! %%)a466w879:=`rao}~&'*7+4459@ XDaarw \-*0509u=[>Qfgpp%D?R\Xcgr -:(AMcVhk* I ( k 6& + 7 < ? 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