National Haemoglobinopathy Registry. Annual Report 2017/18

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1 National Haemoglobinopathy Registry Annual Report 2017/18

2 National Haemoglobinopathy Registry Annual Report (2017/18) Compiled by Mark Foster MDSAS 3

3 1 Introduction CHAPTER 1 The 2017/18 Annual Report provides stakeholders of the NHR with an update on patient numbers for Sickle Cell and Thalassaemia patients in England. 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 valuable range of information that is available from the NHR. If you would like to make an information request to the NHR please contact support@mdsas.com 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 reporting 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 Update No. No Longer Seen 1,114 Transferred to Other Centre 719 Patient Died 301 Total 2,134 4

4 CHAPTER 12 Sickle Cell Reports Sickle Cell Reports Page No. Figure 2.1 Sickle Cell registrations by centre 6-7 Figure 2.2 Sickle Cell patients by diagnosis type 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 age group 10 Figure 2.6 Sickle Cell patients by therapy type 10 Figure 2.7 Sickle Cell patients by iron chelation type 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 5

5 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 2.1 Sickle Cell registrations by centre 2017/18 Centre Patients Kings College Hospital 1097 Guy s and St Thomas 1040 Royal London 673 North Middlesex 617 Newham University Hospital 497 Queens Hospital (BHR) 490 Birmingham - City Hospital 426 Croydon Health Services NHS Trust 357 Homerton Hospital 349 Queen Elizabeth Hospital, Woolwich 335 North West London Hospitals NHS Trust (Central Middlesex Hospital) 331 St Georges Healthcare NHS Trust, London 318 The Whittington Hospital NHS Trust 313 Manchester Royal Infirmary 303 Manchester Children s Hospital 297 Lewisham Healthcare NHS Trust 289 University College London Hospitals 275 Birmingham Children s 265 Imperial College Healthcare NHS Trust (Hammersmith Hospital) 265 Coventry University Hospital 192 University Hospitals Leicester 173 Imperial College Healthcare Trust (St Mary s) 169 Nottingham University Hospitals 156 St James University Hospital, Leeds 135 Whipps Cross University Hospital 127 University Hospitals Bristol NHS Trust 98 Luton and Dunstable Hospital 97 Darent Valley Hospital 93 Leeds Children s Hospital at LGI 87 6

6 Sickle Cell Reports Figure 2.1 Sickle Cell registrations by centre 2017/18 Centre Patients Northampton General Hospital 84 Oxford Children s Hospital 79 Sheffield Teaching Hospitals 79 Addenbrooke s Hospital Cambridge 78 St Helier University Hospital Trust 75 Sheffield Children s Hospital 72 New Cross Hospital, Wolverhampton 70 Milton Keynes Hospital 62 Royal Victoria Infirmary, Newcastle upon Tyne 52 Southampton University Hospital Trust 50 Oxford University Hospitals NHS Trust 50 Royal Liverpool University Hospital 49 Milton Keynes Hospital Paediatrics 48 East and North Herts NHS Trust - Lister and QE2 Hospital 48 Alder Hey Children s Liverpool 43 Bradford 39 Derby 34 Kettering General Hospital NHS Foundation Trust 34 Medway Maritime Hospital Paediatric 32 James Cook University Hospital, Middlesbrough 26 Wexham Park Hospital 22 Royal Berkshire NHS Foundation Trust 17 Gloucestershire Royal Hospital 13 Princess Royal University Hospital 13 Hull and East Yorkshire Hospitals NHS Trust 8 Basildon and Thurrock University Hospital NHS FT 7 East Lancashire Hospitals NHS Trust <5 University Hospital of North Staffordshire, Stoke-on-Trent <5 7

7 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 2.2 Sickle Cell patients by diagnosis type 2017/18 Figure 2.3 Sickle Cell patients by ethnicity 2017/18 8

8 Sickle Cell Reports Figure 2.4 Map of Sickle Cell registrations by commissioning hub 2017/18 Table 2.4 Table of Sickle Cell registrations by commissioning hub 2017/18 Region No. Patients Region No. Patients London 7,376 West Midlands 916 North West 724 Yorkshire & Humber 694 East Midlands 509 East of England 216 Thames Valley & Wessex 159 South East Coast 136 South West 112 North East & Cumbria 79 9

9 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 2.5 Sickle Cell patients by age group 2017/18 Figure 2.6 Sickle Cell patients by therapy type 2017/18 10

10 Sickle Cell Reports Figure 2.7 Sickle Cell patients by iron chelation type 2017/18 11

11 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 2.8 Map of patients with TCD monitoring by commissioning hub 2017/18 Table 2.8 Table of patients with TCD Monitoring by commissioning hub 2017/18 Region No. Patients Region No. Patients London 1,874 Yorkshire & Humber 297 West Midlands 289 North West 239 East Midlands 123 East of England 77 South East Coast 50 Thames Valley & Wessex 49 North East & Cumbria 17 South West 1 12

12 CHAPTER 1 3 Thalassaemia Reports Thalassaemia Reports Page No. Figure 3.1 Thalassaemia registrations by centre Figure 3.2 Thalassaemia patients by diagnosis type 16 Figure 3.3 Thalassaemia patients by ethnicity 16 Figure 3.4 Map of Thalassaemia registrations by commissioning hub 17 Table 3.4 Thalassaemia registrations by commissioning hub 17 Figure 3.5 Thalassaemia patients by age group 18 Figure 3.6 Thalassaemia patients by therapy type 18 13

13 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 3.1 Thalassaemia registrations by centre 2017/18 Centre Patients The Whittington Hospital NHS Trust 191 University College London Hospitals 133 Birmingham Children s 111 Birmingham - City Hospital 69 Manchester Royal Infirmary 55 Bradford 53 Manchester Children s Hospital 46 North Middlesex 40 University Hospitals Leicester 38 Imperial College Healthcare Trust (St Mary s) 37 Royal London 33 Queens Hospital (BHR) 30 St James s University Hospital, Leeds 29 Coventry University Hospital 26 Imperial College Healthcare NHS Trust (Hammersmith Hospital) 23 Kings College Hospital 22 Luton and Dunstable Hospital 22 St Georges Healthcare NHS Trust, London 18 Newham University Hospital 18 University Hospitals Bristol NHS Trust 16 Leeds Children s Hospital at LGI 16 Sheffield Teaching Hospitals 16 East Lancashire Hospitals NHS Trust 16 North West London Hospitals NHS Trust (Central Middlesex Hospital) 14 Sheffield Children s Hospital 14 Nottingham University Hospitals 13 14

14 Thalassaemia Reports Figure 3.1 Thalassaemisa registrations by centre 2017/18 Centre Patients Oxford Children s Hospital 11 Guy s and St Thomas 9 Homerton Hospital 8 Southampton University Hospital Trust 8 Lewisham Healthcare NHS Trust 7 Oxford University Hospitals NHS Trust 7 Derby 6 Addenbrooke s Hospital Cambridge 6 Wexham Park Hospital 5 Royal Victoria Infirmary, Newcastle upon Tyne 5 Whipps Cross University Hospital <5 Queen Elizabeth Hospital, Woolwich <5 James Cook University Hospital, Middlesbrough <5 University Hospital of North Staffordshire, Stoke-on-Trent <5 East and North Herts NHS Trust - Lister and QE2 Hospital <5 New Cross Hospital, Wolverhampton <5 Northampton General Hospital <5 Croydon Health Services NHS Trust <5 Royal Liverpool University Hospital <5 Royal Berkshire NHS Foundation Trust <5 Alder Hey Children s Liverpool <5 Milton Keynes Hospital <5 15

15 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 3.2 Thalassaemia patients by diagnosis type 2017/18 Figure 3.3 Thalassaemia patients by ethnicity 2017/18 16

16 Thalassaemia Reports Figure 3.4 Map of Thalassaemia registrations by commissioning hub 2017/18 Table 3.4 Thalassaemia registrations by commissioning hub 2017/18 Region No. Patients Region No. Patients London 571 West Midlands 215 Yorkshire & Humber 145 North West 138 East Midlands 62 East of England 29 South West 16 Thames Valley & Wessex 16 North East & Cumbria 9 South East Coast 5 17

17 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 3.5 Thalassaemia patients by age group 2017/18 Figure 3.6 Thalassaemia patients by therapy type 2017/18 18

18 CHAPTER 1 4 Serious Events Serious Event Reports Page No. Figure 4.1 Reported serious events by financial year 2011/ /18 19 Figure 4.2 Reported serious events - Sickle Cell 2017/18 20 Figure 4.3 Total reported serious events - Sickle Cell (All Years) 20 Figure 4.4 Reported serious events - Thalassaemia 2017/18 21 Figure 4.5 Total reported serious events - Thalassaemia (All Years) 21 Figure 4.1 Reported serious events by financial year 2011/ /18 19

19 National Haemoglobinopathy Registry Annual Report (2017/18) Figure 4.2 Reported serious events - Sickle Cell 2017/18 Figure 4.3 Total reported serious events - Sickle Cell (All Years) 20

20 Serious Events Figure 4.4 Reported serious events - Thalassaemia 2017/18 Figure 4.5 Total reported serious events - Thalassaemia (All Years) 21

21 CHAPTER 1 5 Information Requests Table 5.1 New born patients registration status Diagnosis Year No. Born Registered within 365 days Sickle Cell Thalassaemia Table 5.2 Sickle Cell patients on hydroxyurea by age (2016) Diagnosis Age Patients % Hydroxyurea % < % % Sickle Cell (Hb SS) ,160 35% % 18+ 3, % % Total 6, % % 22

22 Information Requests Table 5.3 Sickle Cell and Thalassaemia transfusion status (2016) Diagnosis Patients Transfusion Data Iron Chelation Sickle Cell (6.6%) 245 (2.6%) Thalassaemia (45.4%) 513 (49.2%) Table 5.4 Thalassaemia patients by age and region 2016/17 Region Age Range Thalassaemia Patients East Midlands East of England London North East & North Cumbria North West South East Coast South West Thames Valley and Wessex West Midlands Yorkshire & Humber

23 National Haemoglobinopathy Registry Annual Report (2017/18) MDSAS City View House 5 Union Street Manchester M12 4JD 24

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