Mark Foster Mark.Foster@mdsas.com Replace this photo with your own by going to Insert  Photo  Picture from File.

NHR Annual Meeting November 2016

Current Status November 2016

Sites Active Registrations 11,881

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

Patient Registrations History

Sickle Cell Patients

Sickle Cell Patients by Centre

Sickle Cell Patients by Region

Sickle Cell Patients by Age Group

Sickle Cell Diagnosis Type

Thalassaemia Patients

Thalassaemia Patients by Centre

Thalassaemia patients by region

Thalassaemia Patients by Age Group

Thalassaemia Patients by Diagnosis Type

2 Adhoc Data Requests

Age at Death

Sickle Cell – Stroke – Age of Event

Sickle Cell – Acute Chest Syndrome – Age of Event

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

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%

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

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

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%

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

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

East Midlands map request

Recorded serious events

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