Persons and institutions with a reporting obligation can submit data to the Childhood Cancer Registry electronically or on paper. Within four weeks after data collection, the data has to be reported to the Childhood Cancer Registry by the people or institutions with a reporting obligation.
The work associated with reporting should remain within acceptable limits. Persons and institutions with a reporting obligation may therefore submit reports that they write within the context of their professional activities anyway. These include, for example, tumour board, surgical, pathology, histology or cytology reports, discharge summaries, doctors’ letters and excerpts from the medical records. In doing so, they must ensure that these documents submitted to the cancer registry contain only information relating to cancer.
Childhood Cancer Registry reporting form
The reporting person or institution may decide the form in which data are notified. The Childhood Cancer Registry reporting form contains the minimum information that must be notified by reporting persons to the Childhood Cancer Registry about cancer in children and adolescents under 19. This reporting form can be sent to the Childhood Cancer Registry with the related medical reports either by email or on paper. You don’t have to use this reporting form; it is intended simply as an aid to reporting.
It covers details of the diagnosis (including previous disorders, predispositions and concomitant diseases), follow-up care (including follow-up, long-term complications, changes to treatment, success of treatment and remission) and recurrence (this can be progression, new metastases or a recurrence).
You can download the a check list for medical reports here. It explains which medical reports should be sent with which type of notification.
Electronic data notification (by email)
Please use the HIN-encrypted platform to transmit data by email. Both email addresses (sender and recipient) must be HIN-encrypted. Please use the following address to report data to the Childhood Cancer Registry: firstname.lastname@example.org.
Postal data notification
Data sent by post should be sent in opaque envelopes. CDs or USB sticks should be protected with cardboard or sent in a padded envelope. Electronic data must always be password-protected. The password must be sent separately.