Description: Group of items providing information on chronic disease data collection.
Source
NFDI4Health UC 5.2 requirements
Comment
Cardinality: 1..*, if chronic_diseases == "Yes" AND resource_type == ("Study protocol" OR "Protocol
amendment" OR "Informed consent form" OR "Patient information sheet" OR "Manual of
operations (SOPs)" OR "Statistical analysis plan" OR "Data management plan" OR "Case
report form" OR "Interview scheme and themes" OR "Observation guide" OR "Discussion
guide"
OR "Participant tasks" OR "Other study document" OR "Other"); otherwise 0.. 0
On which of the following common chronic diseases were data collected?
Properties
No 3_0
CD1.1
Rationale
Description: Common chronic diseases on which data were collected in the study.
Additional information: The values originate from the following sources: 1) 10 types of cancer with the highest
incidence in Germany, by gender, based on 2017/2018 German cancer registry data (RKI,
Zentrum für Krebsregisterdaten,
https://www.krebsdaten.de/); 2) 10 cardiovascular
diseases with highest mortality in Germany in 2020 (www.destatis.de). All values follow
the classifiction system ICD-11 (WHO's International Statistical Classification of
Diseases and Related Health Problems, 11th Revision (ICD-11),
https://icd.who.int/en).
From which source(s) are the data generated/extracted?
Properties
No 3_0
CD1.3
Rationale
Description: Source(s) from which information is generated/extracted.
Additional information: Treat prevalent and incident diseases separately (selected values should be specific
for prevalent diseases and then separately incident diseases).
Self-report (questionnaires or interviews), cases verified
A method of data collection which involves asking a participant, for example, through
questionnaires or interviews. The collected information is then verified by asking
the treating physician, through administrative databases (e.g., health insurance data),
or clinical examinations [NFDI4Health].
code "116" (Self-report (questionnaires or interviews), cases verified) from code system "NFDI4Health_CS_MDS_Remaining_Concepts"
Self-report (questionnaires or interviews), cases not verified
A method of data collection which involves asking a participant, for example, through
questionnaires or interviews. The collected information is not verified by any external
information or clinical examinations [NFDI4Health].
code "117" (Self-report (questionnaires or interviews), cases not verified) from code system
"NFDI4Health_CS_MDS_Remaining_Concepts"
Administrative databases
Information about administrative data [Maelstrom (doi: 10.1371/journal.pone.0200926)].
code "C0242356" (Databases) from code system "Unified Medical Language System"