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National Haemoglobinopathy Registry Annual Report 2015/16

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National Haemoglobinopathy Registry Annual Report (2015/16)

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1 Introduction

Status Update No.

No Longer Seen 382

Transferred to other centre 249

Patient Died 140

Total 771

This 2015/16 data update follows the same format as the 2014/15 data update in providing stake-holders of the NHR with an update on patient numbers for Sickle Cell and Thalassaemia in Eng-land. All patient data entered on the NHR by 31st March 2016 is included in this data update.

An extra chapter has been included in this Annual Report titled Information Requests. Detailed in this chapter are the information requests received by the NHR from various stakeholders. These published information requests demonstrate the range of information that is available from the NHR. If you would like to make an information request to the NHR please contact [email protected]

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.

The next NHR Annual Report for 2016/17 will be published towards the end of 2017.Figure 1.1 Patient status updates

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Sickle Cell Reports Page No.

Figure 2.1 Sickle Cell registrations by centre 6-7

Figure 2.2 Sickle Cell patients by diagnosis type chart 8

Figure 2.3 Sickle Cell patients by ethnicity 8

Figure 2.4 Map of Sickle Cell registrations by commissioning hub 9

Table 2.4 Table of Sickle Cell registrations by commissioning hub 9

Figure 2.5 Sickle Cell Patients by current Age 10

Figure 2.6 Sickle Cell therapy type chart 10

Figure 2.7 Sickle Cell iron chelation type chart 11

Figure 2.8 Map of patients with TCD monitoring by commissioning hub 12

Table 2.8 Table of patients with TCD monitoring by commissioning Hub 12

Sickle Cell Reports2

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Figure 2.1 Sickle Cell registrations by centre 2015/16

Centre Patients

Kings College Hospital 1007

Guy’s and St Thomas 936

Newham University Hospital 674

North Middlesex 565

Royal London 503

Queens Hospital (BHR) 472

Homerton Hospital 346

North West London Hospitals NHS Trust (Central Middlesex Hospital) 335

Queen Elizabeth Hospital, Woolwich 328

The Whittington Hospital NHS Trust 280

Manchester Childrens Hospital 275

Croydon Health Services NHS Trust 270

Manchester Royal Infirmary 261

Birmingham - City Hospital 259

Birmingham Children’s 255

Imperial College Healthcare NHS Trust (Hammersmith Hosptial) 247

Lewisham Healthcare NHS Trust 246

University College London Hospitals 238

St Georges Healthcare NHS Trust, London 229

Imperial College Healthcare Trust (St Mary’s) 147

Coventry University Hospital 136

St James’s University Hospital, Leeds 128

Nottingham University Hospitals 127

Whipps Cross University Hospital 122

University Hospitals Leicester 114

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Sickle Cell Reports

Figure 2.1 Sickle Cell registrations by centre 2015/16

Centre Patients

University Hospitals Bristol NHS Trust 98

Luton and Dunstable Hospital 92

Sheffield Teaching Hospitals 77

Milton Keynes Hospital 77

St Helier University Hospital Trust 75

Sheffield Childrens Hospital 64

Darent Valley hospital 58

Addenbrooke’s Hospital Cambridge 53

Southampton University Hospital Trust 46

Oxford Children’s Hospital 46

New Cross Hospital, Wolverhampton 45

Royal Victoria Infirmary, Newcastle upon Tyne 40

Royal Liverpool University Hospital 39

Northampton General Hospital 37

East and North Herts NHS Trust - Lister and QE2 Hospital 37

Bradford 32

Medway Maritime hospital Paediatric 32

Kettering General Hospital NHS foundation Trust 30

Derby 30

Oxford University Hospitals NHS Trust 26

Alder Hey Childrens Liverpool 26

Royal Berkshire NHS Foundation Trust 22

James Cook University Hospital, Middlesbrough 20

Gloucestershire Royal Hospital 14

Princess Royal University Hospital 13

Hull and East Yorkshire Hospitals NHS Trust 9

Basildon and Thurrock University Hospital NHS FT 6

Sickle & Thalassaemia Centre 2

East Lancashire Hospitals nhs Trust 1

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Figure 2.2 Sickle Cell diagnosis type chart 2015/16

Figure 2.3 Sickle Cell patients by ethnicity 2015/16

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Sickle Cell Reports

Figure 2.4 Map of Sickle Cell registrations by commissioning hub 2015/16

Table 2.4 Table of Sickle Cell registrations by commissioning hub 2015/16

Region No. Patients

East of England 188

Thames Valley & Wessex 140

South West 112

South East Coast 90

North East & Cumbria 60

Region No. Patients

London 6804

West Midlands 695

North West 602

Yorkshire & Humber 539

East Midlands 415

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Figure 2.5 Sickle Cell Patients by current Age 2015/16

Figure 2.6 Sickle Cell therapy type chart 2015/16

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Sickle Cell Reports

Figure 2.7 Sickle Cell iron chelation type chart 2015/16

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Figure 2.8 Map of patients with TCD monitoring by commissioning hub 2015/16

Region No. Patients


East of England 56

South East Coast 47


Region No. Patients

London 1816

West Midlands 264

North West 233


East Midlands 118

Table 2.8 Table of patients with TCD Monitoring by commissioning hub 2015/16

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Thalassaemia Reports Page No.

Figure 3.1 Thalassaemia registrations by centre 14-15

Figure 3.2 Thalassaemia patients by diagnosis type 16

Figure 3.3 Thalassaemia patients ethnicity table 16

Figure 3.4 Map of Thalassaemia registrations by commissioning hub 17

Table 3.4 Table of Thalassaemia registrations by commissioning hub 17

Figure 3.5 Thalassaemia patients by age group 18

Figure 3.6 Thalassaemia therapy type chart 18

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Figure 3.1 Thalassaemia registrations by centre 2015/16

Centre Patients

The Whittington Hospital NHS Trust 140

Birmingham Children’s 120

University College London Hospitals 120

Manchester Childrens Hospital 59

Manchester Royal Infirmary 48

Bradford 42

Birmingham - City Hospital 39

North Middlesex 38

Imperial College Healthcare Trust (St Mary’s) 34

Royal London 32

University Hospitals Leicester 31

Queens Hospital (BHR) 30

St James’s University Hospital, Leeds 27

Newham University Hospital 25

Kings College Hospital 23

Coventry University Hospital 22

Luton and Dunstable Hospital 20

Imperial College Healthcare NHS Trust (Hammersmith Hosptial) 18

Sheffield Teaching Hospitals 16

University Hospitals Bristol NHS Trust 16

North West London Hospitals NHS Trust (Central Middlesex Hospital) 14

Sheffield Childrens Hospital 13

St Georges Healthcare NHS Trust, London 12

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Thalassaemia Reports

Figure 3.1 Thalassaemisa registrations by centre 2015/16

Centre Patients

Nottingham University Hospitals 10

Lewisham Healthcare NHS Trust 8

Southampton University Hospital Trust 8

East Lancashire Hospitals nhs Trust 8

Homerton Hospital 7

Guy’s and St Thomas 7

Derby 6

Royal Victoria Infirmary, Newcastle upon Tyne 5

Addenbrooke’s Hospital Cambridge 5

Whipps Cross University Hospital 4

Queen Elizabeth Hospital, Woolwich 3

James Cook University Hospital, Middlesbrough 3

Royal Berkshire NHS Foundation Trust 3

Royal Liverpool University Hospital 3

New Cross Hospital, Wolverhampton 3

Oxford University Hospitals NHS Trust 3

East and North Herts NHS Trust - Lister and QE2 Hospital 3

Northampton General Hospital 2

Croydon Health Services NHS Trust 2

Alder Hey Childrens Liverpool 1

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Figure 3.3 Thalassaemia patients ethnicity table 2015/16

Figure 3.2 Thalassaemia patients by diagnosis type 2015/16

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Thalassaemia Reports

Figure 3.4 Map of Thalassaemia registrations by commissioning hub 2015/16

Table 3.4 Table of Thalassaemia registrations by commissioning hub 2015/16

Region No. Patients

East Of England 28

South West 19



Region No. Patients

London 505

West Midlands 184

North West 119


East Midlands 49

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Figure 3.5 Thalassaemia patients by age group 2015/16

Figure 3.6 Thalassaemia therapy type chart 2015/16

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Figure 4.1 Reported serious events by financial year 2011/12 - 2015/16

Serious Events4 Serious Event Reports Page No.

Figure 4.1 Reported serious events by financial year 2011/12 - 2015/16 19

Figure 4.2 Reported serious events - Sickle Cell 2015/16 20

Figure 4.3 Total reported serious events - Sickle Cell (All Years) 20

Figure 4.4 Reported serious events - Thalassaemia 2015/16 21

Figure 4.5 Total reported serious events- Thalassaemia (All Years) 21

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

Figure 4.2 Reported serious events - Sickle Cell 2015/16

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Serious Events

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

Figure 4.4 Reported serious events - Thalassaemia 2015/16

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Information Requests 2015/165Diagnosis Year No. Born Registered within 365 days

Sickle Cell 2011 275 88





Thalassaemia 2011 24 6





Other 2011 31 13

Other 2012 12 6

Other 2013 11 7

Other 2014 9 7

Other 2015 3 3

Figure 5.1 New born patients registration status

Figure 5.2 Sickle Cell patients on hydroxyurea by age

Diagnosis Age Patients % Hydroxyurea %

Sickle Cell (Hb SS) <5 516 8.4% 10 1.9%

Sickle Cell (Hb SS) 5-17 2160 35% 243 11.3%

Sickle Cell (Hb SS) 18+ 3488 56.6% 620 17.8%

Total 100% 873 14.2%

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Diagnosis Patients Transfusion Data % Iron Chelation %

Sickle Cell 9770 637 6.6% 245 2.6%

Thalassaemia 1041 473 45.4% 513 49.2%

Cardiac Values No. Results

<8ms 20

8-12ms Moderate Loading 34

13-20ms Mild Loading 53

>20ms No Loading 280

Region Age Range Thalassaemia Patients

East Midlands 0-14 11East Midlands 15+ 38East Of England 0-14 18East Of England 15+ 10London 0-14 92London 15+ 414North East & North Cumbria 0-14 4North East & North Cumbria 15+ 4North West 0-14 50North West 15+ 59South West 15+ 16Thames Valley and Wessex 0-14 3Thames Valley and Wessex 15+ 11West Midlands 0-14 105West Midlands 15+ 79Yorkshire & Humber 0-14 39Yorkshire & Humber 15+ 70

Total Patients 1023

Figure 5.3 Sickle Cell and Thalassaemia transfusion status

Figure 5.4 Cardiac Values (Annual Review)

Figure 5.5 Thalassaemia patients by age and region

Information Requests

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Figure 5.6 East Midlands patients map

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