Within DZHK studies, a large amount of clinical data and biological materials will be collected in a standardised manner and recorded in the scientific infrastructure. Data and biological materials from this collection shall be used for the benefit of interested scientists all over the world and serve as a basis for solving a number of different questions of biomedical research. For this reason, these data and biological materials may be made available for secondary use in accordance with the terms of the DZHK Use and Access Policy.
From the beginning, capturing data across studies in a standardised manner in DZHK studies was strived for to reach the highest possible level of comparability, reusability, and quality. The detailed description of the data and biological materials captured in the scientific infrastructure (what is captured), including associated metadata (how it is captured), are published in the DZHK Data Catalogue in accordance with the internationally recognized FAIR principles, promoting the value of the DZHK collection for the scientific community.
What is the structure of the DZHK-Data Catalogue?
The DZHK Data Catalogue currently consists of twelve modules which also represent the current state of standardisation of DZHK data capture. There is a basic data set comprising 42 items (primarily components of module “Anamnese und klinische Diagnosen” [Medical History and Clinical Diagnoses]) that all DZHK studies are obligated to capture. Furthermore, there are currently ten optional modules on capturing clinical data from different cardiological assessment procedures. This ensures, that the mandatory basic data set with 42 data points is relatively slim and provides the flexibility needed with regard to the different requirements of the DZHK studies (for example, echocardiography is not performed in every study). Simultaneously, standardisation of these optional modules ensures that the collected data remain comparable across studies. In addition to that, there is one module that describes the biobanking basic sets. Since the standardisation of the DZHK capture instrument is not yet completed, the Data Catalogue will also continue to be expanded with additional modules.
A cross-study summary and graphical illustration is provided for data points derived from the basic data set. These graphs are updated regularly.
Why does the DZHK publish a Data Catalogue?
The DZHK Data Catalogue is a transparent way for interested scientists to determine what kind of data and biological materials are collected and how they are captured to facilitate the submission of usage requests. Furthermore, the DZHK Data Catalogue may also serve as a guide for capturing data oneself (see e.g. SFB 1002 Göttingen). In a best-case scenario, this might render such data collections comparable to the DZHK collection.