Title: The Anthony Nolan Trust
1The Anthony Nolan Trust
- Pauline Makoni
- Operations Manager
HTA 18.09.08
2The 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
3Bone 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
4Activities
- 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
5Donor 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
6Consent
- 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
7Information 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
8Graft 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)
9International 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)
10HPC 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
11Source 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
12Cord 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
13Accreditation 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
14Registered Charity No. 803716 /
SC038827 www.anthonynolan.org.uk