Dr David Dxtr Th Parkinon UK Brain Bank In aociation with Vrion 1/2011
introducing th brain bank Contnt Uing my tiu 4 Collcting my tiu 6 Storing my tiu 8 Uing my pronal information 10 W r th UK largt brain bank ddicatd to Parkinon. W collct th tiu from popl with and without th condition. W collct th brain, pinal cord and a ampl of crbropinal fluid th clar fluid that urround th brain and pinal cord. Our donatd tiu i currntly upporting projct in th UK and around th world. Thi rarch could lad to dicovri that hlp u to find a cur and improv lif for vryon affctd by Parkinon. Th brain bank i wholly fundd by Parkinon UK and uppli tiu fr of charg to rarchr tudying Parkinon all ovr th world. It i rgularly rviwd by an indpndnt panl including xprt on Parkinon, tiu banking, rarch and popl affctd by th condition. And all our proc hav gaind approval from th National Rarch Ethic Srvic. W hav a full brain bank information pack which you can rad and thn dicu th mattr with tho clo to you. If you do not hav an information pack and want to rqut on, or for any othr qution contact th brain bank dirctly: 020 7594 9732 brainbank@imprial.ac.uk parkinon.org.uk/brainbank on brain can b ud in up to 50 rarch tudi 2 Julia Stl, Rarch Tchnician 3
Uing my tiu What tiu i collctd for rarch? W collct th ntir brain, th ntir pinal cord and a ampl of crbropinal fluid th clar, colourl liquid that urround th brain and pinal cord. In th futur, w may nd to collct mall ampl of othr tiu uch a kin or gut for rarch. I don t hav Parkinon. Could my brain till hlp rarchr? Y, rarchr urgntly nd brain without Parkinon alo calld control brain. Control brain ar ntial for xprimnt. Scintit can only work out what i going wrong in Parkinon by comparing control brain with th brain of popl with Parkinon. Why i tiu ndd for Parkinon rarch? Popl with Parkinon don t hav nough of a chmical calld dopamin bcau crtain nrv cll in thir brain hav did. By tudying brain tiu from popl with and without Parkinon w ar bginning to undrtand why th nrv cll di. Thi i vital to dvloping tratmnt that can low, top or vn rvr Parkinon. In addition to rarch your tiu may alo b ud for taching purpo in th training of halth car profional. What about imilar condition? W alo collct tiu from popl with Parkinon rlatd diordr including multipl ytm atrophy and progriv upranuclar paly. Can I donat othr part of my body through othr donor chm a wll? Y, w can work with othr UK organ donor chm for tranplantation and rarch, including th NHS Organ Donor Rgitr. Jut lt u know which othr donor chm you ar rgitrd with by phon, mail or lttr and w ll updat your rcord. Unfortunatly, w cannot work with whol body donation chm a th rquir th whol body including th brain. 4 Dr David Dxtr 5
Collcting my tiu What i th tiu collction proc? Th brain bank tam ar told of th dath of a donor by omon phoning our 24 hour mrgncy numbr: 07659 104537 which i clarly givn on your brain bank donor card. Th Parkinon UK Brain Bank tam thn arrang: Th body to b tranportd to th hopital nart to plac of dath A pathologit or pot mortm tchnician at th hopital to rtriv th tiu A mmbr of th brain bank tam travl to collct th tiu Th body to b rturnd to undrtakr for th funral Th tiu i thn takn to th brain bank for procing and torag w r on call 24 hour a day What will my nxt-of-kin nd to do? Rgitr th dath with th GP or if out of working hour with th on-call locum doctor o a to obtain a dath crtificat. Arrang a funral dirctor. Th brain bank tam will work with th funral dirctor to arrang tiu collction if th donor did at hom. Whn will th tiu b rtrivd? Brain and pinal cord tiu dtriorat vry rapidly. W aim to collct tiu within 24 hour of dath. But w can accpt brain up to 48 hour aftr dath. Th Parkinon UK Brain Bank tam i on call 24 hour a day and w aim to organi and carry out th donation a quickly and moothly a poibl. Pla mak ur that your nxt of kin or lgal rprntativ, and th halthcar profional looking aftr you know of your wih to donat. Why i it omtim NOT poibl to go ahad with th tiu collction? W try to avoid dlay by working cloly with famili and profional. But omtim w ar unabl to collct and prrv tiu within 48 hour. On th rar occaion w cannot go ahad with collction bcau aftr 48 hour tiu ar unfortunatly no longr uitabl for rarch. And, if donatd tiu i not going to b ud for th purpo pcifid in th givn connt, Th Human Tiu Act (2006) tat that it mut not b takn. Poibl raon why w may b unabl to collct tiu: Lack of a dath crtificat Dath bing rfrrd to th coronr for cau of dath to b confirmd Lack of uitabl hopital mortuary faciliti to rmov th tiu Othr condition which affct th brain uch a cancr, or infction lik HIV Will brain donation intrfr with my funral arrangmnt or having an opn cakt viwing? No, brain donation will not dlay or intrfr with your plan for a funral, crmation or burial. Th brain and pinal cord ar rmovd in a rpctful and carful mannr that will not affct th apparanc of th body. 6 7
Dr Tilo Kunath u i t y m g in r o t S How will my tiu b mad availabl to rarchr? To hlp a many rarch projct a poibl, your brain will b dividd into hundrd of ampl. Th ampl ar tord afly and curly at th Parkinon UK Brain Bank. Scintit from th UK and around th world u our tiu in thir rarch. Our panl of cintific xprt and popl affctd by Parkinon carfully rviw ach application bfor approving th projct w upply tiu to. W cannot prdict what typ of projct your tiu will b ud for or whr th rarch will b carrid out. Tiu may alo b ud for taching purpo or in th training of halthcar profional. Howvr, all rarch w upport i thically and cintifically approvd, and will hlp u bttr undrtand Parkinon and ultimatly find a cur. 8 w collct mor than 120 brain pr yar How will my tiu b tord and how will it b dipod of? W carfully prrv donatd tiu by toring it ithr in formaldhyd (a liquid fixativ) or frzing thm at -85 C. Thi man th tiu can b ud for rarch for up to tn yar or mor. Whn tiu i no longr uitabl for rarch w carfully dipo of it, aftr conultation with Parkinon UK and othr appropriat organiation. All tiu i dipod of in a rpctful mannr. W nvr forgt th popl that th tiu w rciv rprnt. 9
l a n o r p y m g in U information Do you nd to know my mdical hitory? Y. Having acc to dtaild information about ach donor mdical hitory man that rarchr can match up pcific ymptom with th chang thy in th brain. Whn you join th Brain Donor Rgitr w rqut prmiion to acc your mdical rcord and ak you to fill in a dtaild qutionnair vry two yar. Thi giv u vital information about your ymptom, liftyl, and mdication. Thi information i kpt trictly confidntial and providd to rarchr on an anonymou bai. porting p u r w in th projct ound uk and arrld th wo 10 Will my pronal dtail and mdical rcord b kpt confidntial? Y. All rgitration form and aociatd paprwork ar tord curly and rmain trictly confidntial. Whn a brain i donatd, ach donor i givn a uniqu idntification cod and all pronal information i rmovd. Pronal dtail ar nvr hard with anyon outid of th Parkinon UK Brain Bank including rarchr. What if I ign up and thn chang my mind? W undrtand that brain donation i not right for vryon. You ar fr to chang your mind at any tim jut contact th brain bank to lt u know. W will thn rturn your ignd connt form and rmov your dtail from our databa. 11
W r th Parkinon upport and rarch charity. If you want an information pack or for any othr qution contact th brain bank dirct: Parkinon UK Brain Bank Cntr for Nurocinc Imprial Collg London Hammrmith Hopital Campu 160 Du Can Road London W12 0NN 020 7594 9732 brainbank@imprial.ac.uk parkinon.org.uk/brainbank Parkinon UK Fr* confidntial hlplin 0808 800 0303 parkinon.org.uk hllo@parkinon.org.uk *call ar fr from UK landlin and mot mobil ntwork. Parkinon UK, Jun 2011. Parkinon UK i th oprating nam of th Parkinon Dia Socity of th Unitd Kingdom. A company rgitrd in England and Wal (948776). Rgitrd offic: 215 Vauxhall Bridg Road, London SW1V 1EJ. A charity rgitrd in England and Wal (258197) and in Scotland (SC037554).