Description of Module "Epidemiology of Chronic Diseases"

Overview

Many clinical, epidemiological and public health studies, and associated resources collect data on chronic diseases. However, collection methods, disease classifications and ascertainment methods/diagnostic criteria differ greatly across studies. This information is important, as study differences impact interpretability, interoperability and reusability of data. The MDS includes a specific module with this focus, providing a better classification system and improving findability of studies and associated resources collecting data related to chronic diseases. This module is applied to all resources stating that chronic diseases were addressed.

To address differences in study design and data collection methods by specific chronic disease (i.e., outcome-specific metadata), this module asks for sources of information (e.g., self-reported, administrative databases, biosamples, and/or physical measures) for each of the most common types of cancer and cardiovascular diseases (CVDs) in Germany, as well as for type 2 diabetes mellitus, if collected. Information is specific for incident and prevalent diseases. For self-reported chronic diseases, case verification must be indicated.

The ability to classify studies and associated resources by chronic disease, sources of information on the chronic disease, prevalent and/or incident disease type, and diagnosis verification allows for improved interpretation and reusability of data. Scientists seeking to reuse data may benefit from this information by assessing comparability and compatibility with other studies and their research questions.

The module of chronic diseases was developed based on the ICD-10 classification system (1). The cancer types listed in the module are based on German cancer registry data and include the types of cancer with the highest incidence in the country for the years 2017-2018 (2) and the CVDs listed include the CVDs with the highest mortality in Germany for the year 2020 (3). The module allows data entry for any other disease not included in this list by means of an open text field with autocomplete function based on the ICD-10 classification system. Users are encouraged to enter all the diseases addressed by the study or associated resource.

Example:

An epidemiological study addressing type 2 diabetes collected the following related data: self-reported disease, personal and family history at baseline and follow-up, physician report (confirmation) on diagnoses, fasting glucose and glycated haemoglobin (HbA1c) measured from blood samples at baseline and follow-up. All data for these data collections were processed and are available for research purposes.

Based on the data available related to type 2 diabetes in this study, the following should be selected in the module chronic diseases: prevalent and incident type 2 diabetes mellitus (ICD-10: E11-E14) from sources self-report (cases verified) and biosamples.

References:

  1. World Health Organization, 2019. https://icd.who.int/browse10/2019/en#
  2. Zentrum für Krebsregisterdaten. https://www.krebsdaten.de/
  3. Statistisches Bundesamt. https://www.destatis.de/

Authors (with affiliations) of the Epidemiology of Chronic Diseases Module

  • Carolina Schwedhelm, Max Delbrück Center for Molecular Medicine in the Helmholtz Association
  • Tobias Pischon, Max Delbrück Center for Molecular Medicine in the Helmholtz Association
  • Hajo Zeeb, Leibniz Institute for Prevention Research and Epidemiology – BIPS
  • Katharina Nimptsch, Max Delbrück Center for Molecular Medicine in the Helmholtz Association