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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

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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