National Haemoglobinopathy Registry Update Rob Hollingsworth Paul Kane

National Haemoglobinopathy Registry - Update Rob Hollingsworth, Paul Kane

NHR Updates Future Possibilities Data View Newborn Outcomes and System Demonstration What do you want from the NHR?

Thank you for your support!

Registration Status

Annual Review Status 2018/19 Centre Oxford University Hospitals NHS Trust Active Patients Pat AR Started Pat AR AR Completion Signed Off (Active ) 63 56 51 88. 89% 369 277 276 75. 07% 61 39 32 63. 93% 459 293 10 63. 83% Milton Keynes Hospital 79 49 40 62. 03% Addenbrooke's Hospital Cambridge 89 51 26 57. 30% 552 312 56. 52% 32 18 16 56. 25% 545 302 0 55. 41% 2 1 0 50. 00% 368 183 4 49. 73% 21 10 8 47. 62% 1, 083 499 474 46. 08% 85 39 0 45. 88% Homerton Hospital 357 158 44. 26% St Georges Healthcare NHS Trust, London 360 157 92 43. 61% 54 23 19 42. 59% 390 163 41. 79% 32 12 6 37. 50% 676 244 8 36. 09% Oxford Children's Hospital 94 31 31 32. 98% James Cook University Hospital, Middlesbrough 24 7 0 29. 17% University Hospitals Leicester 195 56 25 28. 72% Luton and Dunstable Hospital 126 36 0 28. 57% Coventry University Hospital 212 59 56 27. 83% Lewisham Healthcare NHS Trust 326 90 78 27. 61% 58 14 5 24. 14% Manchester Childrens Hospital Sheffield Childrens Hospital University College London Hospitals Birmingham - City Hospital Wexham Park Hospital The Whittington Hospital NHS Trust Colchester Hospital University Manchester Royal Infirmary Royal Berkshire NHS Foundation Trust Kings College Hospital Bradford Alder Hey Childrens Liverpool Croydon Health Services NHS Trust Kettering General Hospital NHS foundation Trust North Middlesex Royal Victoria Infirmary, Newcastle upon Tyne Royal Liverpool University Hospital East and North Herts NHS Trust - Lister and QE 2 Hospital Sheffield Teaching Hospitals Queen Elizabeth Hospital, Woolwich Darent Valley hospital New Cross Hospital, Wolverhampton Guy's and St Thomas Leeds Children's Hospital at LGI Queens Hospital (BHR) Southampton University Hospital Trust Nottingham University Hospitals Derby Northampton General Hospital Whipps Cross University Hospital Birmingham Children's Royal London Newham University Hospital Imperial College Healthcare NHS Trust North West London Hospitals NHS Trust (Central Middlesex Hospital) St James's University Hospital, Leeds University Hospitals Bristol NHS Trust St Helier University Hospital Trust Milton Keynes Hospital Paediatrics Medway Maritime hospital Paediatric East Lancashire Hospitals nhs Trust Hull and East Yorkshire Hospitals NHS Trust Gloucestershire Royal Hospital Princess Royal University Hospital Basildon and Thurrock University Hospital NHS FT Norfolk & Norwich University Hospital NHS Foundation Trust University Hospital of North Staffordshire, Stoke-on-Trent James Paget University Hospital 50 11 11 22. 00% 57 103 364 98 81 1, 090 111 560 70 147 44 85 134 411 831 517 511 12 21 73 19 15 196 19 88 11 14 3 5 4 4 0 0 20 73 0 15 150 18 88 4 13 3 2 0 4 0 0 0 21. 05% 20. 39% 20. 05% 19. 39% 18. 52% 17. 98% 17. 12% 15. 71% 9. 52% 6. 82% 5. 88% 2. 99% 0. 97% 0. 00% 393 173 118 75 48 34 18 15 13 13 9 0 0 0 0 0 0. 00% 0. 00% 6 4 1 0 0 0 0. 00%

NHR Components • Patient Registrations • Serious Events • Annual Review • Patient Card • National Information Service • Public website and Annual Report • Newborn Outcomes Project • NHS Blood Transfusion

Integration GP Systems NHS BT PHE Newborn Outcomes NHS Digital ERS

Newborn Outcomes System Information Service Treatment Centres National Haemoglobinopathy Registry Information Service NHS Network Secure NHS Mail Information transfer SSL Encryption AES 256 database PID Encryption Email Alerts Dashboards Subscription Reports Local Reports inc. data export Approved Stakeholders (e. g. PHE, Treatment Centres) Labs PHE NCARDRS Data Feed Bulk data upload and data forms Data quality and validation Failsafe Reporting

Service Reorganisation – NHR is a central part Clinical Service Sickle Cell & Thalassaemia Clinical Service Patient NHS Funds Clinical Service Outcome?

NHR New Features Patient Lookup

NHR New Features Reports Annual Review Reports Assist patient management National information requirements Allow exporting of data Last review for each registered patient Medications for each registered patient Patient List with specialist imaging date List of patients who have not had their vaccinations List of patients who have not had TCD scans List of patients who have not had Hydroxycarbamide List of patients who have not had Transfusions List of patients who have not had Iron Chelation List of patients who have had a baby

NHR Annual Report 2018 www. nhr. nhs. uk

Involving Patients in their own care Patient Home Diary System 1. 5 Million Patient Entries 20, 000+ Patient Entries per Month Multiple language support Image capture support

Haemtrack Dataset Patient Infections (inc. site) Pain Hospital visits and admissions (days) Investigations and surgeries Antibiotics and Treatments QOL

Dashboard

Click Here

Wound Care – UK Innovate Digital Health Winner Improve outcomes and reduce costs in the management of complex wounds in the community - Involve patients in their own care - Practical, secure image capture - Allow remote monitoring - Integration with NHS patient records App Secure Image Download

Demo https: //apps. mdsas. nhs. uk/spinaldemo

Results so far Spinal Wounds : Significant improvement in wounds management Dermatology : 80% reduction in outpatient appointments Burns : 60% reduction in admissions “Effective use of time and resources and able to follow up patients in a community setting more effectively” “Reduces the need for patients to attend the Centre in person when they should be on bed rest and patients can be involved in their own care” “Enables continuity of care - staff can monitor improvement or deterioration of pressure ulcers using the photographic evidence” “Easy and straightforward to use and provides a secure way to record and transfer images without any data confidentiality issues”

Information and services for patients Your text here

NHR Data View November 2018

Current Status August 2018

Registration History

Sites 59 Centres using the NHR

Sites 12, 337 Active patients

10, 465 Sickle Cell 1, 201 Thalassaemia 671 Other

Status update No. No longer seen 1, 114 Transferred 719 Patient Died 301 Total 2, 134 13 Centres have yet to update a patient status

Registered > 1 centre 984 Sickle Cell 111 Thalassaemia

Sickle Cell patients

Sickle Cell diagnosis type

Sickle Cell patients by age group

Sickle Cell patients by centre

Sickle Cell patients by centre

Sickle Cell patients by Commissioning Hub

Thalassaemia Patients

Thalassaemia patients by diagnosis type

Thalassaemia patients by age group

Thalassaemia patients by centre

Thalassaemia patients by region

{2 Serious Events }

Recorded serious events

Sickle Cell serious events 17/18

Thalassemia serious events 17/18

{3 Information Requests }

Patients by Region West Midlands Yorkshire & Humber 0 345 162 4014 Adult 232 102 4275 36 306 0 331 84 1 535 217 6119 61 1 1 0 0 0 1 64 218 6887 93 617 1 600 129 1 880 North West Scotland South East South West Wales Unknown Total 0 390 0 Wales 45 South West 269 South East 1 Scotland 311 North West 56 North East 116 2551 London 158 Age Group East Midlands <18 North East of England Sickle Cell Total 380 10197 East Midlands East of England London West Midlands Yorkshire & Humber Thalassaemia <18 16 4 84 8 72 1 38 1 0 121 49 394 Adult 43 19 381 6 59 2 66 18 1 80 64 739 Unknown 0 0 1 0 0 0 0 1 2 Total 59 23 466 14 131 3 104 19 1 201 114 1135 Age Group Total

East Midlands map request

TCD monitoring Hb SS & Hb SC Patients aged between 2 and 17 Patients 3605 TCD monitoring 2171 (60%)

Newborns by Diagnosis Sickle Cell Age When Registered 0 -3 Months 4 -6 Months 7 -9 Months 10 -12 Months 1 Year (13 Months To 23 Months) 2 Years 3 Years 4 Years 0 -4 Years Total Year Registered 2009 25 11 12 13 42 28 44 44 219 2010 27 21 17 15 36 44 52 34 246 Total 2011 2012 2013 2014 2015 2016 2017 32 34 49 42 42 22 23 296 17 36 34 19 30 28 24 220 17 27 30 16 21 15 11 166 14 14 21 19 14 17 15 142 50 42 42 37 251 50 32 44 46 283 47 62 41 48 332 42 40 36 28 242 57 42 51 44 301 21 16 11 8 138 38 21 20 17 169 383 327 341 306 2181 Thalassaemia Age When Registered 0 -3 Months 4 -6 Months 7 -9 Months 10 -12 Months 1 Year (13 Months To 23 Months) 2 Years 3 Years 4 Years 0 -4 Years Total Year Registered 2009 2010 2011 2012 2013 2014 2015 2016 Total 2017 2 2 0 0 2 2 1 1 3 0 0 2 2 4 1 2 8 6 4 1 5 1 4 0 3 4 4 0 6 1 0 2 2 5 4 2 33 25 18 10 3 8 7 9 31 1 3 14 8 3 2 2 20 8 7 11 5 40 5 4 6 3 37 2 4 0 1 17 4 4 10 2 31 3 1 15 4 2 6 1 26 38 36 44 27 231

Conclusion The National Haemoglobinopathy Registry (NHR) is vital to support the management and improvement of the Haemoglobinopathy service

NHR Future Development Discussion