1. Mark Foster
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2. NHR
Annual Meeting
November 2016

3. Current Status
November 2016

4. Sites
Active Registrations
11,881

5. Patient Status Updates
No Longer Seen
445
Transferred to other centre
270
Patient Died
156
Total
871

6. Patient Registrations History

7. Sickle Cell Patients

8. Sickle Cell Patients by Centre

9. Sickle Cell
Patients by Region

10. Sickle Cell Patients by Age Group

11. Sickle Cell Diagnosis Type

12. Thalassaemia Patients

13. Thalassaemia Patients by Centre

14. Thalassaemia patients by region

15. Thalassaemia Patients by Age Group

16. Thalassaemia Patients by Diagnosis Type

17. 2
Adhoc Data Requests

19. Age at Death

20. Sickle Cell – Stroke – Age of Event

21. Sickle Cell – Acute Chest Syndrome – Age of Event

22. Hb SS Patients Who Have Received Hydroxyurea
Age
Patients
Age %
Received Hydroxyurea
Percentage
Hydroxyurea
< 5
516
8.4 10
1.9
5 - 17
2160
35.0
243
11.3
18+
3488
56.6
620
17.8
6164
100.0
873
14.2

23. Hb SS & SickleB0thal patients aged between 2 and 16
TCD Monitoring
Hb SS & SickleB0thal patients aged between 2 and 16
Patients
TCD Monitored
Percentage
2690
1709
64%

24. TCD Monitored Patients
TCD Monitoring
Hb SS & SickleB0thal patients aged between 2 and 16
Region
Patients
TCD Monitored Patients %
East Midlands
104 70 67
East Of England 74 45 61
London
1752
1060
North East & North Cumbria 36 14 39
North West
232
170 73
South East Coast 55 33 60
South West 26
Thames Valley and Wessex 40 25 63
West Midlands
222
162
Yorkshire & Humber
149
130 87

25. TCD Results (Annual Review)
TCD Status
Results %
Abnormal 49 3
Conditional 88 5
Inadequate 28 2
None
340 18
Normal
1328 71
Unobtainable 27 1
Unusually low

26. Cardiac Values (Annual Review)
Results
Percentage
<8ms 23 5%
8-12ms Moderate Loading 34 8%
13-20m Mild Loading 59
13%
>20ms No loading
337
74%

27. Thalassaemia Patients by Region%
East Midlands 54 5
East Of England 28 3
London
520 49
North East & North Cumbria 9 1
North West
119 11
South West 16
Thames Valley and Wessex 19 2
West Midlands
188 18
Yorkshire & Humber
114

28. Registered within year
Newborns Registered Within 1 Year
Diagnosis
Birth year
Newborns
Registered within year
Thalassaemia
2012 27 16
2013 19 13
2014 12 10
2015
Sickle Cell
243
125
201
103
136 97
101 88

29. East Midlands map request

30. Recorded serious events

31. THANK YOU