1. Immunoglobulin Database Data update 2017/18
Mark Foster

2. 01/ CQUIN results & ITP data

3. CQUIN 1 - Data entry time for infusions < 3 months
Year
Percent
2017/18
95%
2016/17
90%

4. CQUIN 2 - Patients with recorded weight
Year
Percent
2017/18
98%
2016/17
60%

5. CQUIN 3 - Outcomes reported
Year
Grey outcomes
Blue ST Outcomes
2017/18 (Q1 / Q2)
78%
83%
2016/17 (Q1 / Q2)
31%
34%
2015/16 (Q1 / Q2)
23%
28%

6. CQUIN 4 – Long-term blue patients with recorded annual review
Year
Patients
Reviews
Percent
2017/18
4945
4014
81%
2016/17
4800
1127
24%

7. ITP – Dosing adjustment
2015 & 2016
<=1g per Kg - 40%
>=2g per Kg – 60%
2017
<=1g per Kg - 57%
>=2g per Kg – 43%
2018 (YTD)
<=1g per Kg - 71%
>=2g per Kg - 29%

8. ITP – Dosing
2016/17
338,000g
2017/18
253,000g
-25% (85,000g)
Savings of £2.9 million

9. 02/ Immunoglobulin use 2017/18

10. Recorded volumes Year Patients Grams 2017/18 17,231 +6% 5,750,000 +7%
2016/17
16,230
+11%
5,350,000
+16%
2015/16
14,457
+10%
4,600,000

11. Usage by treatment regime

12. Patients treated by region 2017/18

14. Patients by speciality

15. Recorded usage by speciality

16. Immunology Diagnosis 2015/16 % Change 2016/17 2017/18
Primary immunodeficiencies
1,186,409
+6%
1,357,636
+14%
1,473,946
+19%
Secondary antibody deficiencies 
324,392
+34%
467,580
+44%
597,635
+28%
Specific antibody deficiency
57,063
+15%
74,033
+30%
83,974
+13%
Impaired specific antibody production 
35,785
-19%
35,403
-1%
34,199
-3%
Thymoma with immunodeficiency
7,456
+17%
10,782
+45%
13,863
+29%
Other Conditions
12,866
-14%
12,352
-4%
11,103
-10%
HSCT in primary immunodeficiencies
2,297
+159%
3,848
+68%
4,018
+4%
Total
1,626,267
+10%
1,961,634
+21%
2,218,737

17. Neurology Diagnosis Total 2015/16 % Change 2016/17 % 2017/18 CIDP
936,345
+8%
1,080,528
+15%
1,202,247
+11%
Multifocal motor neuropathy 
471,338
+12%
550,028
+17%
614,838
Myasthenia gravis 
180,488
+5%
201,480
226,458
Guillain–Barré syndrome
140,850 -
168,861
+20%
183,863
+9%
Inflammatory myopathies
111,145
155,209
+40%
162,793
Stiff person syndrome 
40,062
-5%
47,691
+19%
55,309
+16%
Other Conditions
49,481
+13%
52,442
+6%
53,698
+2%
Paraprotein-associated demyelinating neuropathy
41,792
+7%
43,863
44,561
Rasmussen syndrome 
6,290
+86%
9,178
+46%
8,104
-12%
Total
1,977,791
2,309,279
2,551,870
+10%

18. Haematology Diagnosis Speciality total 2015/16 % Change 2016/17
2017/18
Immune thrombocytopenic purpura - Acute
261,965
+19%
279,644
+7%
216,519
-23%
Other Conditions
21,985
31,473
+43%
41,382
+132%
Alloimmune thrombocytopenia
25,577
+90%
30,798
+20%
28,241
-8%
Autoimmune haemolytic anaemia
23,199
34,616
+49%
28,581
-17%
Immune thrombocytopenic purpura - Persistent
72,575
+30%
58,432
-19%
36,370
-38%
Coagulation factor inhibitors
16,305
-2%
23,160
+42%
21,310
-80%
Haemophagocytic syndrome
9,681
+8%
10,920
+13%
13,426
+23%
Speciality total
440,058
 +20%
481,050
+9% 
395,010
-18% 

19. 03/ Product Usage

20. Yearly IV product usage

21. Yearly IV product usage

22. Yearly SC product usage

23. 04/ Data outputs & requests

24. Data output Trust reports on local database
Monthly commissioning reports
Specialised services dashboards
Local reports
Methods subscription report
CQUINS
Commissioners reports
Information service
Annual Report
Individual requests from stakeholders

25. Data requests 2017/18 Kiovig supply issues
Improving value project - Inflammatory myopathies
SRIAP dataset
Commissioning requests
Usage reports for CMU
Neurology – GIRFT
Active patients in commissioning hub
CMU sales Vs MDSAS usage

26. Kiovig supply issues – March 2018
Provided multiple reports to support NHSE & CMU
Carried out emergency stocktake of immunoglobulin
Supported the forecasting of required volumes for remaining period of the FW

27. Summary
Database has been crucial to supporting immunoglobulin strategy
2017/18 saw record volumes recorded once again
ITP cost savings achieved – increased 1g per Kg dosing
Utilise grey outcome results for evidence review
Dose recording method needs to be addressed
Action trust mergers
Challenging year ahead – database team ready to support

28. Contact support@mdsas.com +44 (0)161 277 7917
City View House 5 Union Street Ardwick Manchester M12 4JD
mdsas.com

29. Immunoglobulin Database The Royal College of Physicians, London
Annual Meeting 2018
The Royal College of Physicians, London
December 2018