Page 0038

RESEARCH AND DEVELOPMENT

38 CANCER CONTROL 2021

0

20

40

60

80

100

120

04/02/19 04/07/19 01/12/19 29/04/20 26/09/20 23/02/21 23/07/21 20/12/21

Data sets

2 4

14

80

0

20

40

60

80

100

Less than

25%

25-49% 50-74% 75-100%

Percentage of registries

Data completeness

Surgery (81/114)

22

13

84

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Surgical procedure (63/81 )

5 8

15

71

Radiotherapy (73/114)

5 8

15

71

Chemotherapy (73/114)

16

6

14

64

HER-2 status (64/114)

37

6

21

37

BRCA1/2 (19/114)

13

3

16

67

ER/PR (61/114)

9

16

25

51

Ki67 (35/114)

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49% 50-74% 75-100%

Data completeness

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49% 50-74% 75-100%

Data completeness

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49%5

0-74% 75-100%

Data completeness

administrative problems have

arisen, both at the London

School of Hygiene and Tropical

Medicine (LSHTM) and among

cancer registries around the

world.

One of the most important

features of this ERC

consolidator grant, offering

financial support to cancer

registries in LMICs, has turned

out to be more difficult than we

expected, due to the need to

set up legal contracts between

LSHTM and each registry

or its host institution. Other

difficulties have arisen because

English is not the mother tongue

for most of our colleagues

in LMICs, and because it has

proved impossible for some

cancer registries even to open

a bank account, or if that is

achieved, to receive financial

support from another country,

in this case the United Kingdom.

The United Kingdom's exit

from the European Union

(EU) also did not help. In many

European countries, where

the General Data Protection

Regulation (GDPR) was already

mis-interpreted or overinterpreted by

administrators,

it has become much more difficult to obtain essential data for

research, e.g., full dates of birth, diagnosis or last known vital

status. Similar regulations have created problems in releasing

detailed data in North America.

Despite the difficulties posed by the COVID-19 pandemic

and by Brexit, we have finalised the legal contracts to permit

the transfer of funds for data collection to selected cancer

registries in LMICs, and data-sharing agreements with cancer

registries in the 27 EU Member States to enable transmission

of sensitive personal data in compliance with the EU GDPR.

Nevertheless, this was an extremely time-consuming exercise.

Unless cancer control policies are to be based on statistical

projections from data that are scanty or of average quality, or

even, where data are non-existent, modelled on the basis of

untestable assumptions from data collected in other countries,

action is urgently required to create population-based cancer

planning appropriate cancer control strategies to guarantee

equal access to cancer prevention, screening and treatment to

women in every country in the world.

The evidence from this research will help drive policy to

reduce inequalities in survival from the most common cancers

in women. This work will involve targeted dissemination of

the findings to scientists, policymakers, cancer patients and

the general public. Results from VENUSCANCER will also

be used by the Organisation for Economic Co-operation and

Development (OECD) in its Health at a Glance series, and for

the WHO Global Breast Cancer Initiative.

COVID-19 pandemic: ethical, legal and

administrative issues

The COVID-19 pandemic of 2020-2021 has changed many

aspects of our lives, including research. Many technical and

0

20

40

60

80

100

04/02/19 04/07/19 01/12/19 29/04/20 26/09/20 23/02/21 23/07/21 20/12/21

Data sets

2 4

14

80

0

20

40

60

80

100

Less than

25%

25-49% 50-74% 75-100%

Percentage of registries

Data completeness

Surgery (81/114)

22

13

84

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Surgical procedure (63/81 )

5 8

15

71

Radiotherapy (73/114)

5 8

15

71

Chemotherapy (73/114)

16

6

14

64

HER-2 status (64/114)

37

6

21

37

BRCA1/2 (19/114)

13

3

16

67

ER/PR (61/114)

9

16

25

51

Ki67 (35/114)

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49% 50-74% 75-100%

Data completeness

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49% 50-74% 75-100%

Data completeness

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

Less than

25%

25-49% 50-74% 75-100%

Data completeness

Less than

25%

25-49%5

0-74% 75-100%

Data completeness

Figure 4: Breast cancer - availability and completeness of treatment data 2012-2017 (from questionnaires)

Figure 5: Breast cancer - availability and completeness of data on molecular biomarkers 2012-2017 (from

questionnaires)

Index

  1. Page 0001
  2. Page 0002
  3. Page 0003
  4. Page 0004
  5. Page 0005
  6. Page 0006
  7. Page 0007
  8. Page 0008
  9. Page 0009
  10. Page 0010
  11. Page 0011
  12. Page 0012
  13. Page 0013
  14. Page 0014
  15. Page 0015
  16. Page 0016
  17. Page 0017
  18. Page 0018
  19. Page 0019
  20. Page 0020
  21. Page 0021
  22. Page 0022
  23. Page 0023
  24. Page 0024
  25. Page 0025
  26. Page 0026
  27. Page 0027
  28. Page 0028
  29. Page 0029
  30. Page 0030
  31. Page 0031
  32. Page 0032
  33. Page 0033
  34. Page 0034
  35. Page 0035
  36. Page 0036
  37. Page 0037
  38. Page 0038
  39. Page 0039
  40. Page 0040
  41. Page 0041
  42. Page 0042
  43. Page 0043
  44. Page 0044
  45. Page 0045
  46. Page 0046
  47. Page 0047
  48. Page 0048
  49. Page 0049
  50. Page 0050
  51. Page 0051
  52. Page 0052
  53. Page 0053
  54. Page 0054
  55. Page 0055
  56. Page 0056
  57. Page 0057
  58. Page 0058
  59. Page 0059
  60. Page 0060
  61. Page 0061
  62. Page 0062
  63. Page 0063
  64. Page 0064
  65. Page 0065
  66. Page 0066