NHR - National Haemoglobinopathy Registry · 2021. 1. 13. · CHAPTER1 3 1 Introduction The 2019/20...

National Haemoglobinopathy Registry Annual Data Report 2019/20

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National Haemoglobinopathy Registry Annual Report - 2019/20

www.nhr.nhs.uk

Compiled byMark Foster MDSAS

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1 Introduction

The 2019/20 Annual Data Report provides stakeholders of the NHR with an update on patient numbers for Sickle Cell and Thalassaemia patients in England.

The removal of inactive patients from reporting is necessary to maintain an accurate portrayal of patient populations. Figure 1.1 details the number of patients that have been removed from report-ing since the function to update the status of patients was added to the NHR. We encourage users of the NHR to update the status of their patients accordingly.

Figure 1.1 Patient status updates

Status No.

No longer seen 2,374

Patient transferred 1,202

Patient died 529

Total updates 4,105

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Sickle Cell Reports2

Sickle Cell Reports Page No.

Table 2.1 Sickle Cell registrations by centre 5-6

Figure 2.2 Sickle Cell patients by diagnosis type 7

Figure 2.3 Sickle Cell patients by ethnicity 7

Figure 2.4 Map of Sickle Cell registrations by commissioning hub 8

Table 2.4 Table of Sickle Cell registrations by commissioning hub 8

Figure 2.5 Sickle Cell patients by age group 9

Figure 2.6 Sickle Cell patients by therapy type 9

Figure 2.7 Sickle Cell patients by iron chelation type 10

Figure 2.8 Map of Sickle Cell patients with TCD monitoring by commissioning hub 11

Table 2.8 Table of patients with TCD monitoring by commissioning hub 11

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Sickle Cell Reports

Table 2.1 Sickle Cell registrations by centre

Sickle Cell Reports

Sickle Cell Reports Page No.

Table 2.1 Sickle Cell registrations by centre 5-6

Figure 2.2 Sickle Cell patients by diagnosis type 7

Figure 2.3 Sickle Cell patients by ethnicity 7

Figure 2.4 Map of Sickle Cell registrations by commissioning hub 8

Table 2.4 Table of Sickle Cell registrations by commissioning hub 8

Figure 2.5 Sickle Cell patients by age group 9

Figure 2.6 Sickle Cell patients by therapy type 9

Figure 2.7 Sickle Cell patients by iron chelation type 10

Figure 2.8 Map of Sickle Cell patients with TCD monitoring by commissioning hub 11

Table 2.8 Table of patients with TCD monitoring by commissioning hub 11

Centre Name Registrations

Guy’s and St Thomas 1,201Kings College Hospital 1,143Manchester University NHS Foundation Trust 747Royal London 726North Middlesex 645Birmingham - City Hospital 544Queens Hospital (BHR) 511London Northwest University Healthcare NHS Trust 507Imperial College Healthcare NHS Trust 494Newham University Hospital 475Queen Elizabeth Hospital, Woolwich 397Lewisham Healthcare NHS Trust 387St Georges Healthcare NHS Trust, London 369Homerton Hospital 369University College London Hospitals 341Croydon Health Services NHS Trust 336The Whittington Hospital NHS Trust 331Birmingham Children’s 296University Hospitals Leicester 226Nottingham University Hospitals 203Coventry University Hospital 201St James’s University Hospital, Leeds 148Whipps Cross University Hospital 123Addenbrooke’s Hospital Cambridge 118Darent Valley Hospital 107Luton and Dunstable Hospital 107Northampton General Hospital 107Leeds Children’s Hospital at LGI 106Milton Keynes Hospital 99University Hospitals Bristol NHS Trust 98Sheffield Teaching Hospitals 93

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Table 2.1 Sickle Cell registrations by centre


Sheffield Childrens Hospital 87New Cross Hospital, Wolverhampton 85St Helier University Hospital Trust 75Royal Victoria Infirmary, Newcastle upon Tyne 67Oxford University Hospitals NHS Trust 67Milton Keynes Hospital Paediatrics 66Alder Hey Childrens Liverpool 66Royal Liverpool University Hospital 61East and North Herts NHS Trust - Lister and QE2 Hospital 57Bradford 52Derby 48Kettering General Hospital NHS Foundation Trust 43Southampton University Hospital Trust 43Medway Maritime Hospital Paediatric 32Royal Berkshire Hospital Paediatrics 32Royal Berkshire NHS Foundation Trust 29James Cook University Hospital, Middlesbrough 29Wexham Park Hospital 29Oxford Children’s Hospital 27Wexham Park Hospital Paediatrics 19Great Western Hospital Paediatrics 13Gloucestershire Royal Hospital 13Princess Royal University Hospital 13Hull and East Yorkshire Hospitals NHS Trust 8Norfolk & Norwich University Hospital NHS Foundation Trust 8Buckinghamshire NHS Trust Paediatrics 7Basildon and Thurrock University Hospital NHS FT 7Colchester Hospital University 6Great Western Hospital NHS Foundation Trust (Adult services) 6Broomfield Hospital - Chelmsford <5East Lancashire Hospitals NHS Trust <5University Hospital of North Staffordshire, Stoke-on-Trent <5

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Sickle Cell Reports

Figure 2.3 Sickle Cell patients by ethnicity

Figure 2.2 Sickle Cell patients by diagnosis type

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Table 2.4 Table of Sickle Cell registrations by commissioning hub

Region Registrations

London 8,074

West Midlands 1,139

North West 877

Yorkshire & Humber 865

East Midlands 793


East of England 306

Thames Valley & Wessex 253

South East Coast 139

South West 117

North East & Cumbria 96

Figure 2.4 Map of Sickle Cell registrations by commissioning hub

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Sickle Cell Reports

Figure 2.5 Sickle Cell patients by age group

Figure 2.6 Sickle Cell patients by therapy type 2019/20


East of England 306


South East Coast 139

South West 117


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Figure 2.7 Sickle Cell patients by iron chelation type

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Sickle Cell Reports

Figure 2.8 Map of Sickle Cell patients with TCD monitoring by commissioning hub

Table 2.8 Table of patients with TCD Monitoring by commissioning hub

Region Patients

London 1,903


West Midlands 273

North West 201

East Midlands 171

Region Patients

East of England 95


South East Coast 64


South West 8

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Thalassaemia Reports3Thalassaemia Reports Page No.

Table 2.1 Thalassaemia registrations by centre 13-14

Figure 2.2 Thalassaemia patients by diagnosis type 15

Figure 2.3 Thalassaemia patients by ethnicity 15

Figure 2.4 Map of Thalassaemia registrations by commissioning hub 16

Table 2.4 Table of Thalassaemia registrations by commissioning hub 16

Figure 2.5 Thalassaemia patients by age group 17

Figure 2.6 Thalassaemia patients by therapy type 17

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Figure 3.1 Thalassaemia registrations by centre


The Whittington Hospital NHS Trust 224

University College London Hospitals 173

Manchester University NHS Foundation Trust 171

Birmingham Children’s 120

Royal London 120

Birmingham - City Hospital 101

Imperial College Healthcare NHS Trust 81

Bradford 64

North Middlesex 57

University Hospitals Leicester 53

London Northwest University Healthcare NHS Trust 42

St James’s University Hospital, Leeds 42

Queens Hospital (BHR) 40

Coventry University Hospital 34

Kings College Hospital 31

St Georges Healthcare NHS Trust, London 31

Guy’s and St Thomas 29

Luton and Dunstable Hospital 22

Nottingham University Hospitals 21

Sheffield Teaching Hospitals 20

Leeds Children’s Hospital at LGI 18

Homerton Hospital 18

East Lancashire Hospitals NHS Trust 17

University Hospitals Bristol NHS Trust 16

Sheffield Childrens Hospital 16

Oxford University Hospitals NHS Trust 16

Thalassaemia Reports

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Figure 3.1 Thalassaemisa registrations by centre


Addenbrooke’s Hospital Cambridge 14

Royal Victoria Infirmary, Newcastle upon Tyne 14

Derby 13

Lewisham Healthcare NHS Trust 11

Wexham Park Hospital 10

Newham University Hospital 10

Royal Liverpool University Hospital 10

Southampton University Hospital Trust 9

James Cook University Hospital, Middlesbrough 9

Queen Elizabeth Hospital, Woolwich 9

Alder Hey Childrens Liverpool 7

New Cross Hospital, Wolverhampton 6

Northampton General Hospital 6

Buckinghamshire NHS Trust Paediatrics 6

Whipps Cross University Hospital 5

Hull and East Yorkshire Hospitals NHS Trust 5

Royal Berkshire NHS Foundation Trust 5

University Hospital of North Staffordshire, Stoke-on-Trent <5

Wexham Park Hospital Paediatrics <5

Milton Keynes Hospital <5

Croydon Health Services NHS Trust <5

East and North Herts NHS Trust - Lister and QE2 Hospital <5

Norfolk & Norwich University Hospital NHS Foundation Trust <5

Oxford Children’s Hospital <5

Great Western Hospital Paediatrics <5

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Figure 3.3 Thalassaemia patients by ethnicity

Figure 3.2 Thalassaemia patients by diagnosis type


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Figure 3.4 Map of Thalassaemia registrations by commissioning hub

Table 3.4 Thalassaemia registrations by commissioning hub


London 853

West Midlands 261

North West 205


East Midlands 99



East of England 40


South West 17

South East 0

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Figure 3.5 Thalassaemia patients by age group

Figure 3.6 Thalassaemia patients by therapy type




East of England 40


South West 17

South East 0

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Figure 4.1 Reported serious events by financial year 2011/12 - 2019/20

Serious Events4Serious Event Reports Page No.

Figure 4.1 Reported serious events by financial year 2011/12 - 2019/20 18

Figure 4.2 Reported serious events - Sickle Cell 2019/20 19

Figure 4.3 Total reported serious events - Sickle Cell (All Years) 19

Figure 4.4 Reported serious events - Thalassaemia 2019/20 20

Figure 4.5 Total reported serious events - Thalassaemia (All Years) 20

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Figure 4.3 Total reported serious events - Sickle Cell (All Years)

Figure 4.2 Reported serious events - Sickle Cell 2019/20

Serious Events

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Figure 4.4 Reported serious events - Thalassaemia 2019/20

Figure 4.5 Total reported serious events - Thalassaemia (All Years)

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NHR - National Haemoglobinopathy Registry · 2021. 1. 13. · CHAPTER1 3 1 Introduction The 2019/20...

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