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RESEARCH AND DEVELOPMENT

36 CANCER CONTROL 2021

complete in their registry.

IIn February 2019, over 300 cancer registries were invited

to complete online questionnaires to identify those which

have data at the required level of completeness, or were

willing to improve their data. Analyses of the questionnaires

were presented in Lisbon, Portugal (May 2019), in Vancouver,

Canada (June 2019) and in Moscow, Russian Federation

(September 2019). By September 2019, 123 cancer

registries in 42 countries (4 lower-middle-income, 14 uppermiddle-income, 24 high-income)

had submitted at least one

questionnaire, but most registries (80%) submitted all three.

Cancer registries have continued to submit questionnaires

to be considered for participation. By mid-September 2021, we

had received 374 questionnaires from 136 cancer registries

(Figure 2). The impact of the COVID-19 pandemic is visible.

For most of the data items that we wish to examine, the

answer as to whether they are collected routinely was

categorised as "Yes", "No" or "Unknown" and, if "Yes", the

expected level of completeness was categorised as less than

25%, 25%-49%, 50%-74%, 75%-100%, or unknown. Several

questions invited free-text replies.

The questionnaire on breast cancer included 71 questions,

which produced more than 300 separate data items (variables).

The questionnaire on cervical cancer included 62 questions

(300 variables), while the questionnaire on ovarian cancer

included 54 questions (over 250 variables).

We will include cancer registries with the highest availability

and completeness of the required data. Following analysis

of the questionnaires for each cancer, the data collection protocol was finalised in November 2019. The protocol enables

cancer registries to start their own database for the study, but

following rigorous agreed rules.

We defined "basic information" as demographic data (e.g.,

age) and tumour data (e.g., the anatomic site and microscopic

appearance of the tumour). We evaluated three criteria for the

inclusion of cancer registries in VENUSCANCER:

J Basic information, plus data on stage at diagnosis and

treatment: for all three cancers, slightly more than 50%

of cancer registries collected these data with adequate

completeness.

J Basic information, plus data on stage at diagnosis,

treatment and molecular biomarkers: for all cancers,

around 30% of cancer registries collected these data with

adequate completeness.

J Basic information plus data on stage at diagnosis, molecular

biomarkers, treatment and socioeconomic status: for all

cancers, only 5% of cancer registries collected these data

with adequate completeness.

However, after considering the willingness of colleagues

to collect additional data for individual women from clinical

records, these percentages rose to 76%-79%, 44%-51%, and

9%-14%, respectively.

If we include only registries that can provide all the variables

we want to analyse at the required level of completeness

(option 3), the worldwide scope of the project would be

severely constrained. Therefore, we selected the criteria that

will enable us to conduct a study on patterns of care with the

Figure 2: Number of registries that have submitted questionnaires or data

0

20

40

60

80

100

120

140

160

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

Questionnaires

Data sets

4

14

80

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

Data completeness

Surgery (81/114)

22

13

84

Less than

25%

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

Data completeness

Surgical procedure (63/81 )

8

15

71

Radiotherapy (73/114)

5 8

15

71

Chemotherapy (73/114)

0

20

40

60

80

100

Percentage of registries

0

20

40

60

80

100

Percentage of registries

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

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