Pediatric Oncology and Hematology Registry "Hope for children"

19/03/2026
19/03/2026
Data source
Human
Cancer registry
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Access and validation

Governance details

Documents or webpages that describe the overall governance of the data source and processes and procedures for data capture and management, data quality check and validation results (governing data access or utilisation for research purposes).

Governance.pdf

English (82.63 KB - PDF) View document

Biospecimen access

Are biospecimens available in the data source (e.g., tissue samples)?

No

Access to subject details

Can individual patients/practitioners/practices included in the data source be contacted?

Yes

Description of data collection

Data are collected in Pediatric Oncology and Hematology Clinics participating in the registry network. Clinical information is entered through a secure web-based registry application designed for structured clinical data capture.

Data entry is performed by clinical personnel and supported by trained data managers within participating clinics. Standardised electronic forms are used to collect information on diagnosis, disease characteristics, treatment, outcomes and follow-up.

The system supports longitudinal patient records and allows updates throughout the course of treatment and follow-up. Data are stored in a central database and can be updated or corrected by authorised users according to role-based access permissions.
Event triggering registration

Event triggering registration of a person in the data source

Disease diagnosis

Event triggering de-registration of a person in the data source

Death
Loss to follow up

Event triggering creation of a record in the data source

A record is created in the registry when a patient diagnosed with a pediatric cancer or hematological malignancy is entered into the registry system by an authorised user in a participating Pediatric Oncology and Hematology Clinic. The initial record is typically created at or shortly after diagnosis when the patient begins diagnostic procedures or treatment in a specialised clinic.
Data source linkage

Linkage

Is the data source described created by the linkage of other data sources (prelinked data source) and/or can the data source be linked to other data source on an ad-hoc basis?

No
Data management specifications that apply for the data source

Data source refresh

Monthly

Informed consent for use of data for research

Required for all studies

Possibility of data validation

Can validity of the data in the data source be verified (e.g., access to original medical charts)?

Yes

Data source preservation

Are records preserved in the data source indefinitely?

Yes

Approval for publication

Is an approval needed for publishing the results of a study using the data source?

Yes

Data source last refresh

Common Data Model (CDM) mapping

CDM mapping

Has the data source been converted (ETL-ed) to a common data model?

No