Events

From cohort studies and registries to epidemiological and clinical studies – these datasets can be requested by researchers to address new research questions. However, the application process is not uniformly regulated. Different legal regulations, varying data processing requirements, and the lack of a comprehensive infrastructure for research data have led to individual solutions. In our series, we aim to bring together data holders and researchers.

In the fourth edition on 08 January 2025, from 4:00 to 4:45 PM, the topic "Accessing Data from Cancer Registries" will be on the agenda:

As a researcher, how can I use data from medical registries for my research question? Who should I contact, and what information is required? How long does the process take? Will I receive data or analyses, and in what format? What are the costs? What commitments will I need to make?
The cancer registries, including 15 state cancer registries and the Centre for Cancer Registry Data, process over 100 data applications annually. Using cancer registration as an example, this session will outline how the process works in practice. It will describe the expected content of a data use application, the approval process, and the data provided after signing a data usage agreement. The session will also explore how the cancer registration process can be further standardised and harmonised, building on the Medical Informatics Initiative's preliminary work on access portals and contracts. Finally, the discussion will briefly address the challenges of such processes for medical registries in general.

Lecturers: Tobias Hartz (Clinical Cancer Registry of Lower Saxony), Anne Regierer (DRFZ)

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Please find more information about the series Meet-the-Data@ Gesundheitsforschung here or register directly via our registration form.

Organizers: NFDI4Health & BIH QUEST Center @Charité