The Anthony Nolan Trust

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The Anthony Nolan Trust

• Pauline Makoni
• Operations Manager

HTA 18.09.08
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The start of unrelated donor registries

• 1971 Anthony Nolan born with Wiskott-Aldrich
  syndrome
• 1973 first unrelated donor transplant performed
  (Seattle)
• 1974 first volunteer donor register, The Anthony
  Nolan Trust
• 1979 Anthony died

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Bone Marrow Registers

• NMDP 4,956,003 (82)
• Germany 3,291,880 (51)
• Anthony Nolan 392,558 (79)
• Israel E.M. 374,340 (52)
• Italy 352,666 (63)
• Japan 312,061 (100)
• BBMR 305,345 (91)
• Taiwan 277,294 (86)
• Others 2,179,243
• Total 12,441,390

From Bone Marrow Donors Worldwide 26.08.08
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Activities

• Prototype for registers world wide
• Maintain register of tissue types of prospective
  PBSC and BM donors
• Aim to increase register to assist patients of
  all ethnicities, nationally and internationally,
  in finding a matched unrelated donor
• 70 of all patients unable to find related donor
• Target young adults and minorities
• Donor advocacy
• Unregulated locally other than JMAC till
  inception of HTA ensures we aim to meet EU
  standards and boosts our local and international
  credibility

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Donor Recruitment and Patient Searches

• Recruitment
• Recruit adult volunteer donors (18-40) from the
  general population by running recruitment clinics
  around the country. Donation permitted up to 60
• Currently over 391,000 donors on our register
• HLA type donors in our CPA and EFI accredited
  laboratories
• 400 new donors HLA-A, B, C, DRB1 and CMV tested
  each week

• Patient Searches
• Perform searches of registers and cord blood
  banks worldwide to find matching donors for
  patients requiring transplants
• 1,260 new UK patients referred in 2007 (50
  increase 2003-8)
• 14,865 search requests received worldwide in 2007

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Consent

• HTA is responsible for ensuring compliance to
  consent code and by an independent assessment
  process approves BM donations from children and
  adults.
• Premise for unrelated donations consent gained
  from adults who are capable (as defined by HTA
  code on consent) of making informed decisions and
  that information is disseminated to donors on an
  ongoing basis by different methods (written,
  spoken)
• Consent is required at/for
• Registration for initial HLA typing
• CT HLA typing and virology prior to final
  selection
• Donation at medical and day of donation BM,
  PBSC and DL covers collection, storage, discard
  etc
• Cryopreservation prior to collection if
  necessary
• Research ethics approved research studies

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Information dissemination process ensures donors

• are knowledgeable about procedures, risks and
  likely outcome for recipients
• agree to be tested for infectious disease markers
  and understand results communication procedure
• are willing to donate to an anonymous recipient
  anywhere in the world (anonymity maintained for a
  minimum of two years)
• know they are free to withdraw at any time (the
  effect this will have on a patient at the work-up
  to donation stage is made clear)
• voluntarily provide consent for altruistic
  donation
• understand follow up procedures

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Graft Selection

• Unrelated Donors (HPC-M and HPC-A)
• New blood samples Confirmatory typing and
  virology on potentially matched donors
• 4538 donors tested
• 2007 484 work ups received
• 368 MUDs to patients (221 UK/Ireland and 147
  overseas)
• 241 donations imported
• Cord blood units
• Initially to treat aplastic anaemia - 1988
• 212 cords imported to date for single and double
  tx (77 in 2007)

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International Activity

• regulates and coordinates registry activities and
  standards
• over 120 000 potential recipients, approx. 16 000
  new searches each year
• 42 of world wide unrelated donor transplants are
  performed using donors from another country
• 3,029 patients received HPC-M (BM)
• 5,974 patients received HPC-A (PBSC)
• 1,350 patients received HPC-C (cord blood)

(World Marrow Donor Association 2007 statistics)
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HPC provided by ANT to overseas patients in 2007
(147)
Patients in 23 countries received donations from
an Anthony Nolan Trust donor -62 BM/PBSC
exported stayed within EU, -28 to North America
-10 elsewhere
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Source of imported haematopoietic stem cells for
UK patients in 2007 - Total 318
UK patients received transplants from donors from
20 different countries -59 from EU
countries -35 from North America -6 from
elsewhere
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Cord Blood Bank and Research Institute

• Cord Blood Bank
• Collection at Kings College, London
• Processing and storage at CBB in Nottingham
• Placed on Anthony Nolan register
• Research alternative uses of cord blood
• Research Institute
• HLA to improve tx outcomes
• G-CSF proof of safety

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Accreditation and Regulation

• Registry WMDA accredited. International donor
  registries must ensure that the organisations
  they work with comply with standards which are in
  keeping with those of the World Marrow Donor
  Association, HTA, JACIE
• Importation/exportation from registers compliant
  with WMDA standards to transplant centres with
  acceptable transplantation credentials
• EU Tissues and Cell Directive (EUTCD) regulates
  international activity implemented into UK law
  via Quality and Safety Regulations and regulated
  in UK by HTA (facilitates tracing of tissue and
  cell donations, cross border activity and
  safeguards quality).
• Laboratories CPA and EFI accredited
• Collection/Transplant centres JACIE accredited
• HTA 2 licences - registry (incl. activity of
  labs, CCs, TCs) and cord blood bank
• - regulates testing, storing, processing, use
  and distribution of human tissue or cells
• used in treatment
• - Serious Event/Accident Report (SEAR) Ensures
  any trends identified early and
• investigated for benefit of the donor

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Registered Charity No. 803716 /
SC038827 www.anthonynolan.org.uk