Post on 28-Mar-2020
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State of theRegistry2018-2019The Anthony Nolan and NHS Stem Cell Registry Annual Review
Jon, stem cell donor
3 2
Anthony Nolan
2 Heathgate Place 75-87 Agincourt Road London NW3 2NU
anthonynolan.org 0303 303 03 03
NHS Blood and Transplant
Oak House, Reeds Crescent Watford, Hertfordshire WD24 4QN
nhsbt.nhs.uk 0300 123 23 23
Welsh Blood Service
Ely Valley Road, Pontyclun, Mid Glamorgan CF72 9WB
welsh-blood.org.uk 0800 252 266
Registered charity no 803716/SC038827
DKMS UK
Ashburnham House Castle Row, Horticultural Place, London W4 4JQ
dkms.org.uk 020 8747 5620
Registered charity no 1150056
1969CM
CONTENTS
INTRODUCTION: THE STATE OF THE REGISTRY IN 2018-2019 5
KEY STATISTICS IN 2018-2019 6
ALIGNED REGISTRY DEMOGRAPHICS 2018-2019 8
NEW DONORS MADE ACTIVE 2018-2019 10
STEM CELL PROVISION 2018-2019 12
5 4
The aligned registry has reached an incredible milestone – there are now 1.6 million potential donors ready and waiting to save someone’s life. This came after the combined registries saw the most people added in a single year, with over 205,000 new people recruited.
It’s also incredibly encouraging to see that 49% of those added were aged between 16 and 30 years old. This is vital to meeting the demand of transplant centres, as 75% of UK donors selected for UK patients were in this age category, the vast majority of which were also male. This targeted recruitment is also proactively responding to international research that shows that the younger a donor is, the better the outcome for the patient.1
However, although recruitment trends are encouraging, more needs to be done to lower the average age, which was 32 for those recruited in 2018-2019, and 38 for the registry as a whole.
There has also been an increase in imports for UK patients, with 63% of UK patients receiving cells imported from an overseas donor or cord blood unit (CBU) compared to 58% in 2017-2018. There is an evident need to continue improving the quantity and quality of UK donors for UK patients.
There has been positive progress in the typing level of potential donors, which now stands at half of all people on the aligned registry being typed to six loci. International research published in the last year has shown that the ability to match at this level, and provide patients with a 12/12 match, increases their chance of survival.2
While matching to this level could change patient outcomes, there are still patients who struggle to find any kind of match. This is particularly true for patients from a Black, Asian or minority ethnic (BAME) background, with donors from these backgrounds making up only 14% of the aligned registry and 22% of recruitment this year.
However, with the growth of the cord blood bank – which now stands at more than 25,000 searchable clinical-grade CBUs – it is noticeable that many of the cords were donated by mothers from BAME backgrounds. This has resulted in 38% of CBUs on the registry being of BAME parentage.
The aligned registry will continue to grow and develop to meet the needs of patients now, and in the future, as research continues to inform recruitment of the best possible donors to improve transplant outcomes.
INTRODUCTION: THE STATE OF THE REGISTRY IN 2018-2019
The State of the Registry report has been compiled by the Anthony Nolan and NHS Stem Cell Registry – the aligned UK registry formed of Anthony Nolan, DKMS UK, NHS Blood and Transplant, and the Welsh Bone Marrow Donor Registry.
For the first time, this report showcases the work that has been undertaken in the 2018-2019 financial year, rather than calendar year, in line with other aligned registry reporting. In the following pages, the report covers the recruitment of stem cell donors to the aligned registries, umbilical cord blood donations, and provision of donated stem cells to patients in the UK in need of a lifesaving transplant.
Rayhan, transplant recipient
1 Shaw, B. et al. (2018). Development of an Unrelated Donor Selection Score Predictive of Survival after HCT: Donor Age Matters Most. Biology of Blood and Marrow Transplantation, 24(5), pp.1049-1056.
2 Mayor, N. et al. (2019). Recipients Receiving Better HLA-Matched Hematopoietic Cell Transplantation Grafts, Uncovered by a Novel HLA Typing Method, Have Superior Survival: A Retrospective Study. Biology of Blood and Marrow Transplantation, 25(3), pp.443-450.
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KEY STATISTICS IN 2018-2019
There are now over 1.6 million potential stem cell donors on the UK’s aligned registry.
1.6m
Over 205,000 people were added to the aligned registry last year.
There are now more than 25,000 searchable clinical-grade cord blood
units (CBU) banked after 2,216 cords were added in the last year.
1,079 individual patients were helped in the last year.
2,355 searches took place for a UK donor
for a UK patient.
75% of UK donors for UK patients were aged 16–30.
63% of UK donors for UK patients were men aged 16–30.
81% of UK donors for UK patients were male.
37% of UK patients received a UK donor or CBU.
The aligned registry saw a 13% growth in the last year.
49% of those added to the aligned registry were aged under 30.
39% of those added were male, but only
20% of those added were men aged 16–30.
22% of new potential donors are from black, Asian or minority ethnic (BAME) backgrounds.
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ALIGNED REGISTRY DEMOGRAPHICS 2018-2019
500,000
1,000,000
1,500,000
2,000,000
0
2014-2015
1,027,454
2015-2016
1,125,415
2016-2017
1,296,323
2018-2019
1,627,069
2017-2018
1,437,917
ALIGNED REGISTRY DEMOGRAPHICS
ALIGNED REGISTRY OVER TIME
TOTAL 1,627,069
16–20 26,818
21–25 77,676
26–30
31–35 89,742
36–40 78,246
41–45 65,985
46–50 76,334
51–55 79,973
56–60 49,532
AGE
MALE 39%
0100,000 80,000 60,000 40,000 20,000 20,000 40,000 60,000 80,000 100,000
94,790
38,572
116,020
143,858
149,422
136,443
112,426
118,018
111,244
61,970
FEMALE 61%
120,000 140,000
LAST YEAR 1,437,917
SUMMARY OF ALIGNED REGISTRY
70%
18%
12%
31-60 year olds
16-30 year old females
16-30 year old males
0 5 10 15 20 25 30 35 40
PERCENTAGES
41%
20%
39%
35%
29%
36%
OLD
ALIGNED REGISTRY BY ETHNICITY
86,759
106,016
1,277,700
33,331
58,522
11,008
25,354
4,088
2,697
13,630
7,964
African
African Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown 103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
BAME 14% LAST YEAR 13%
CORD BANK BY ETHNICITY
ALIGNED REGISTRY BY HLA TYPING
A,B,DR
A,B,C,DR,DQ,DP
A,B,C,DR,DQ
A,B,C,DR
A,B
13%
50%14%
20%3%
103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
AfricanAfrican-CaribbeanEast AsianHispanicJewishMiddle EasternNorthern EuropeanOther / MixedOther EuropeanSouth AsianUnknown
591
5,234
13,997
218
148
110
213
265
765
1,551
2,534
TOTAL 25,626
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NEW DONORS MADE ACTIVE TOTAL 205,233*
TOTAL 2,216
NEW DONORS MADE ACTIVE BY ETHNICITY
CORD BLOOD UNITS ADDED BY ETHNICITY
16–20
21–25
26–30
31–35
36–40
41–45
46–50
51–55
56–60
17,622
20,728
20,838
18,035
18,191
12,671
9,707
6,759
589283
AGE
FEMALE 61%MALE 39%
0
12,968
13,962
15,032
11,666
11,225
6,577
5,043
3,337
25,000 20,000 15,000 10,000 5,000 5,000 10,000 15,000 20,000 25,000
LAST YEAR 156,012
*As donors turn 60, or upon their request, they will be removed from the registry. This means that the total number of donors made active in the year does not equate to the year-on-year growth of the registry.
SUMMARY OF NEW DONORS MADE ACTIVE
51%
29%
20%
31-60 year olds
16-30 year old females
16-30 year old males
0 5 10 15 20 25 30 35 40
PERCENTAGES
41%
20%
39%
35%
29%
36%
OLD
1,535
30,232
153,480
5,847
8,048
353
206
312
848
2,288
2,084African
African Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
NEW DONORS MADE ACTIVE 2018-2019
103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
117
1,113
47
12
10
19
12
70AfricanAfrican-CaribbeanEast AsianHispanicJewishMiddle EasternNorthern EuropeanOther / MixedOther EuropeanSouth AsianUnknown
468
AfricanAfrican-CaribbeanEast AsianHispanicJewishMiddle EasternNorthern EuropeanOther / MixedOther EuropeanSouth AsianUnknown
207
141
BAME 22%
Donors added to the registry in the last financial year who are searchable for patients.
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STEM CELL PROVISION 2018-2019
UK patient, UK CBU
UK patient, UK unrelated donor
UK patient, imported CBU
UK patient, imported unrelated donor
26
385
65
646
TOTAL 1,122PROVISIONS FOR UK PATIENTS (MARKET SHARE)
100 20406080
16–20 42
21–25 106
26–30 95
31–35 42
36–40 14 8
41–45 5 5
46–50 4
51–55 3 1
56–60 0 1
AGEFEMALE 19%MALE 81%
0 20 40 60 80 100
10
19
15
13
2
TOTAL 385UK DONORS FOR UK PATIENTS
African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
0
0
0
350
0
1
10
1
16
1
6
UK DONORS FOR UK PATIENTS BY ETHNICITY
LAST YEAR 1,122
LAST YEAR 450
IMPORTED UNRELATED DONOR AND CBU
UK UNRELATED DONOR AND CBU
200
400
600
800
0
1000
1200
38%
62%
37%
63%
36%
64%
38%
62%
39%
61%
41%
59%
40%
60%
42%
58%
37%
63%
2010-2011 2011-2012 2012-2013 2013-2014 2014-2015 2015-2016 2016-2017 2018-20192017-2018
PROVISIONS FOR UK PATIENTS OVER TIME (IMPORTS VS UK)
26%
11%
63%
31-60 year olds
16-30 year old females
16-30 year old males
0 5 10 15 20 25 30 35 40
PERCENTAGES
41%
20%
39%
35%
29%
36%
OLD
SUMMARY OF UK DONORS FOR UK PATIENTS
103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
BAME DONORS 7%
15 14 Dolapo, cord blood donor
TOTAL 1,079UK PATIENTS HELPED
Blood samples shipped
Blood samples requested
Searches
2,023
3,199
2,355
UK DONORS FOR UK PATIENTS (SEARCH REQUESTS VS BLOOD SAMPLES REQUESTED)
UK CORD FOR UK PATIENTS BY ETHNICITY
UK patient, UK CBU
UK patient, UK unrelated donor
UK patient, imported CBU
UK patient, imported unrelated donor
23
377
42
637
LAST YEAR 1,071
TOTAL 26 LAST YEAR 22
STEM CELL PROVISION 2018-2019
103,525
53,934
885,913
16,556
32,217
1,827
10,587
350
4,052
20,847
8,756African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
African
African-Caribbean
East Asian
Hispanic
Jewish
Middle Eastern
Northern European
Other
Other European
South Asian
Unknown
0
0
0
13
0
0
0
3
2
8
0
16
Over 205,000 new potential stem cell donors were made available for transplant patients in the UK and worldwide this year, bringing the total aligned registry to over 1.6 million potential donors.The Anthony Nolan and NHS Stem Cell Registry Annual Review 2018-2019