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Mapping of Childhood Cancer Data

1. Name of organization (no abbreviations, please):

2. Name of the database (no abbreviations, please):

3. Country:

4. What category listed below best describes the data source you are reporting on (choose more than one if applicable):

Choose the specific population:

Please enter an 'other' value for this selection.
Please enter an 'other' value for this selection.
Please enter an 'other' value for this selection.

5. Is the target population defined by age?

Please answer:

Start Age:
End age (completed age):
Comments:

6. Do you collect information on all pediatric cancers?

Please select all cancer groups targeted by your data source:

7. Do you collect biological specimens?

Please select all that apply:

Blood
Saliva
Tissue
Urine
Feces
Other - Write In (Required) Please enter an 'other' value for this selection. * This question is required.

8. Please add below information regarding the completed years of your data:

First year with complete data:

Last year with complete data:

Is the data collection ongoing?

Please enter an 'other' value for this selection.

If applicable, please describe gaps or changes in the data collection

9. Please select the data items collected/available in your data source:

Select all that apply:

Demographic
Cancer Description
Stage
Other Prognostic Factors (for example: EWSR1-FLI1 Fusion, initial white blood cell (WBC) count, proto-oncogene B-raf gene (BRAF)).
Comorbid Conditions (any medical conditions, factors influencing health status, and/or complications during the patient’s hospital stay for the treatment of this cancer. For example, other chronic diseases/conditions (heart condition, down syndrome, diabetes).
Treatment
Follow-up

Do you collect any other information?

Demographic Data Item Name / Field Label

Sex/Gender
Age of Diagnosis
Date of Birth
Place of residence

Cancer Description Data Item Name / Field Label

Stage Data Item Name / Field Label

Tumor Size
TNM Stage
Toronto Staging
Other Staging System (Required) Please enter an 'other' value for this selection. * This question is required.

Specify Other Prognostic Factors

Specify Comorbid Conditions

Treatment Item Name / Field Label

Follow-up Data Item Name / Field Label

Vital Status
Date of Death
Date of Last Contact
Subsequent cancer/second primaries – (recorded either as a new registration or as a follow-up information)
Cause of Death
Adherence to treatment
Outcome of treatment (including cure, stable disease, remission, recurrence, relapse)
Specific late effects Please enter an 'other' value for this selection. * This question is required.

10. Is there a data dictionary that can be shared?

Please provide URL below, if URL not available, please send dictionary to fmichels@naaccr.org.

11. Is your database stored in an environment which meets local legal and regulatory requirements for data protection and/or data sharing?

Please enter an 'other' value for this selection.

12. Do you have a data sharing policy?

Please provide URL below, if URL not available, please send dictionary to fmichels@naaccr.org.

13. Your Contact Information *This question is required.

Name
E-mail
Organization
Role

14. Person responsible for data release (if different from the information above):

Name
E-mail
Organization
Role

15. Do you know of other data sources that collect data on childhood cancers?

16. Please provide their information

Name

E-mail

Organization

Role

16. Add more people, please provide their information

Name

E-mail

Organization

Role

16. Add more people, please provide their information

Name

E-mail

Organization

Role

16. Any final comments?

Information regarding the use of your personal data
As part of its public interest missions, the North American of Central Cancer Registries (NAACCR https://www.naaccr.org), in partnership with the members of the G7 Cancer Group, collects information across countries about childhood cancer databases, built in accordance with national legislation and regulations in order to allow reuse of data.
NAACCR is responsible for the use of the personal data indicated in questions 13, 14, and 15.
You can access and rectify these personal data by sending your request to Dr Fernanda Michels at fmichels@naaccr.org