Requests for statistics or aggregated data
The Childhood Cancer Registry can provide unpublished ‘results and findings’ to third parties upon request. According to the Cancer Registration Act (CRA Art. 16, par. 3), such data can only be provided in a format that does not allow the identification of individual persons or institutions. The information is typically provided in the form of aggregated data tables or results from statistical analyses (tables and figures).
If you would like to make a request for statistics or aggregated data, please fill in this form: Data request form for aggregated data
Please note that data delivery may be subject to costs according to the DUR.
Data request for research purposes
The ChCR supports research and provides data for research purposes. According to the CRA (Art. 23, par 2) such data can, in general, only be provided in anonymized form. Non-anonymized data on individual patients can only be provided if the conditions of the Human Research Act (HRA) are satisfied. Such data deliveries require ethical approval and, in general, informed consent from patients. We provide the following options for data requests:
- Requests for aggregated data:
If your research does not require any patient-level data or if you would like to request information to assess the feasibility of the study,please fill in the following form: Data request form for aggregated data
Please note that data delivery may be subject to costs according to the DUR. - Request for individual patient data:
You may request individual patient data in anonymised or non-anonymized form.
Research based on anonymized patient data is not subject to the HRA and does not require ethical approval. The ChCR makes an initial assessment whether the requested data can be viewed as anonymous and may additionally ask you to obtain a clarification of responsibility (“Zuständigkeitsabklärung”) from the responsible ethics committee.
Research based on non-anonymized patient data, which may be either pseudonymised (anonymised for the recipient, the ChCR retains a key to allow re-identification) or identifying, must meet the requirements of the HRA including ethical approval and informed consent and/or waiver of informed consent in exceptional cases (HRA, Art. 34). The data delivery is subject to prior ethical approval and signing of a data transfer agreement. The ChCR requests that researchers provide a draft of the ethics application for review prior to submission to ensure an accurate and consistent description of the requested ChCR data.
If you would like to request individual patient data for research purposes, please fill in this form: Form for individual data request
Please note that data delivery may be subject to costs according to the DUR.
Data request for evaluating quality of diagnosis, treatment or care
The ChCR provides data to third parties for the purpose of evaluating the quality of diagnosis, treatment or care data. According to the CRA (Art. 27) no information about reporting persons or institutions (e.g., oncologists or hospitals) can be disclosed unless they have given their consent. Also, patient data intended for this purpose can only be provided in anonymized form.
If you would like to request data for evaluating quality of diagnosis, treatment or care, please fill in this form: Data request form for evaluation of diagnosis, treatment quality and/or quality of care
Data request for other purposes
If you would like to request data for a purpose not listed above, please contact us per email childhoodcancerregistry.ispm@unibe.ch or using the contact form.
Please note that data delivery may be subject to costs according to the DUR.