Table 6 Completeness of public available chronic disease outcome metadata (by source and overall)a.

From: Chronic disease outcome metadata from German observational studies – public availability and FAIR principles

Study

Source of metadata

General information

Assessment method

Overall status per study

Prevalent/ incident outcome

ICD-10 available

Primary/ secondary outcome

Self-report

Study examinations

Administrative databasesb

Mode & Device

Domain

Reference period

Verification/ ext.validation

CARLA

Scientific publications

2

2

3

3

2

2

3

3

3

Complete metadata for all outcomes

Study website

1 (3)

0 (3)

3 (3)

0 (3)

0 (3)

0 (3)

0 (3)

0 (3)

0 (3)

Study/trial registries

0 (2)

0 (0)

0 (0)

0 (0)

0 (1)

0 (1)

0 (0)

1 (2)

0 (0)

Data documents

3

3

0

3

3

3

3

3

0

Overall

3

3

3

3

3

3

3

3

3

DEGS1

Scientific publications

2

0

3

3

3

3

0

3

na.

Partial metadata

Study website

1 (2)

0 (0)

3 (3)

1 (3)

2 (3)

1 (3)

0 (0)

1 (3)

 na.

Study/trial registries

na.

na.

na.

na.

na.

na.

na.

na.

 na.

Data documents

2

0

0

0

3

3

0

3

 na.

Overall

2

0

3

3

3

3

0

3

 na.

DONALD

Scientific publications

3

3

3

2

3

3

0

3

na.

Partial metadata

Study website

3 (3)

0 (3)

3 (3)

0 (2)

2 (3)

3 (3)

0 (0)

2 (2)

 na.

Study/trial registries

3 (3)

0 (3)

3 (3)

3 (3)

0 (2)

0 (3)

0 (0)

2 (2)

 na.

Data documents

na.

na.

na.

na.

na.

na.

na.

na.

 na.

Overall

3

3

3

3

3

3

0

3

 na.

EPIC-Heidelberg

Scientific publications

3

2

3

3

3

2

3

3

3

Complete metadata for some outcomes

Study website

2 (3)

0 (0)

0 (3)

0 (3)

3 (3)

1 (2)

1 (3)

1 (3)

2 (3)

Study/trial registries

na.

na.

na.

na.

na.

na.

na.

na.

na.

Data documents

na.

na.

na.

na.

na.

na.

na.

na.

na.

Overall

3

2

3

3

3

2

3

3

3

EPIC-Potsdam

Scientific publications

3

2

3

3

3

2

3

3

3

Complete metadata for some outcomes

Study website

2 (2)

0 (0)

0 (3)

2 (3)

1 (3)

1 (1)

3 (3)

1 (3)

1 (3)

Study/trial registries

2 (2)

2 (2)

3 (3)

1 (1)

3 (3)

0 (1)

1 (1)

1 (3)

1 (1)

Data documents

na.

na.

na.

na.

na.

na.

na.

na.

na.

Overall

3

2

3

3

3

2

3

3

3

GEDA 2009, 2010, 2012, 2014/2015, 2019/2020, 2021

Scientific publications

3

na.

3

3

3

3

na.

na.

na.

Complete metadata for all outcomes

Study website

1 (3)

 na.

3 (3)

3 (3)

0 (3)

0 (3)

 na.

 na.

 na.

Study/trial registries

na.

 na.

na.

na.

na.

na.

 na.

 na.

 na.

Data documents

3

 na.

0

0

3

3

 na.

 na.

 na.

Overall

3

 na.

3

3

3

3

 na.

 na.

 na.

GHS

Scientific publications

3

2

3

3

3

3

3

3

3

Complete metadata for some outcomes

Study website

0 (0)

0 (0)

3 (3)

3 (3)

1 (1)

1 (1)

0 (0)

2 (2)

0 (0)

Study/trial registries

0 (0)

0 (0)

3 (3)

0 (0)

0 (1)

0 (1)

0 (0)

0 (2)

0 (0)

Data documents

na.

na.

na.

na.

na.

na.

na.

na.

na.

Overall

3

2

3

3

3

3

3

3

3

GNHIES98 (BGS98)

Scientific publications

2

0

3

2

2

2

2

2

na.

Partial metadata

Study website

0 (2)

0 (0)

3 (3)

2 (2)

0 (2)

0 (2)

0 (0)

0 (2)

 na.

Study/trial registries

na.

na.

na.

na.

na.

na.

na.

na.

 na.

Data documents

3

0

0

0

3

3

0

1

 na.

Overall

3

0

3

2

3

3

2

2

 na.

HCHS

Scientific publications

3

0

3

3

1

0

3

2

3

Partial metadata

Study website

0 (3)

0 (0)

0 (3)

0 (3)

0 (1)

0 (0)

0 (3)

0 (2)

0 (3)

Study/trial registries

2 (3)

0 (0)

3 (3)

1 (3)

0 (1)

0 (0)

0 (3)

1 (2)

0 (3)

Data documents

na.

na.

na.

na.

na.

na.

na.

na.

na.

Overall

3

0

3

3

1

0

3

2

3

HNRS

Scientific publications

3

2

3

3

2

1

3

3

3

Partial metadata

Study website

0 (0)

0 (0)

2 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Study/trial registries

0 (2)

0 (0)

3 (3)

0 (2)

1 (1)

0 (1)

0 (1)

1 (2)

1 (1)

Data documents.

na.

na.

na.

na.

na.

na.

na.

na.

na.

Overall

3

2

3

3

2

1

3

3

3

IDEFICS/ I.Family

Scientific publications

3

3

3

3

3

3

2

3

3

Complete metadata for some outcomes

Study website

1 (3)

0 (3)

0 (3)

0 (3)

0 (3)

0 (0)

0 (2)

1 (3)

0 (3)

Study/trial registries

2 (3)

0 (3)

3 (3)

0 (3)

0 (3)

0 (3)

0 (2)

1 (3)

1 (3)

Data documents

3

0

0

3

3

3

0

3

0

Overall

3

3

3

3

3

3

2

3

3

KORA

Scientific publications

3

2

3

3

2

2

2

3

3

Complete metadata for all outcomes

Study website

1 (2)

0 (2)

3 (3)

1 (3)

0 (2)

0 (2)

0 (2)

1 (2)

0 (3)

Study/trial registries

3 (3)

3 (3)

2 (3)

1 (3)

3 (3)

2 (2)

3 (3)

1 (2)

1 (3)

Data documents

3

1

0

1

3

3

2

2

0

Overall

3

3

3

3

3

3

3

3

3

lidA

Scientific publications

0

3

3

3

0

0

3

na.

3

Complete metadata for all outcomes

Study website

0 (0)

0 (3)

0 (3)

1 (3)

0 (0)

0 (0)

0 (3)

 na.

3 (3)

Study/trial registries

na.

na.

na.

na.

na.

na.

na.

 na.

na.

Data documents

3

0

0

3

3

3

0

 na.

0

Overall

3

3

3

3

3

3

3

 na.

3

LIFE-Adult

Scientific publications

2

0

3

3

3

3

3

3

3

Partial metadata

Study website

0 (2)

0 (0)

2 (3)

1 (2)

0 (2)

0 (1)

0 (2)

1 (2)

0 (0)

Study/trial registries

0 (2)

0 (0)

3 (3)

0 (2)

0 (2)

0 (1)

0 (2)

0 (2)

0 (0)

Data documents

3

0

0

1

3

3

0

3

0

Overall

3

0

3

3

3

3

3

3

3

NAKO

Scientific publications

3

3

3

3

3

3

3

3

3

Complete metadata for all outcomes

Study website

0 (3)

0 (3)

3 (3)

1 (3)

0 (3)

0 (3)

3 (3)

1 (3)

0 (3)

Study/trial registries

2 (3)

0 (3)

3 (3)

0 (3)

0 (3)

0 (3)

0 (3)

1 (3)

2 (3)

Data documents

3

2

0

1

3

3

0

3

0

Overall

3

3

3

3

3

3

3

3

3

SHIP/SHIP Trend

Scientific publications

3

3

3

3

3

1

3

3

3

Complete metadata for all outcomes

Study website

3 (3)

0 (0)

3 (3)

0 (2)

0 (2)

0 (2)

0 (3)

0 (3)

0 (0)

Study/trial registries

3 (3)

2 (2)

3 (3)

2 (3)

3 (3)

3 (3)

2 (3)

1 (3)

3 (3)

Data documents

3

2

0

2

3

3

0

1

0

Overall

3

3

3

3

3

3

3

3

3

Median score per metadata fieldc

3

2

3

3

3

3

3

3

3

  1. “3”, complete metadata for all outcomes; “2”, complete metadata for some outcomes; “1”, partial metadata for some or all outcomes; “0”, missing metadata; “na.”, not applicable (due to study design or absence of metadata source). Numbers in parentheses represent metadata availability from both direct sources of metadata (embedded in the corresponding source) and indirect sources of metadata (available through links and references).
  2. aMetadata considered complete if all aspects of the chronic disease outcome metadata schema (Table 2) are covered for all examined cardiovascular diseases, type 2 diabetes, and cancers; metadata complete for “all outcomes” refers to the evaluation of these diseases only.
  3. bNot considered if consulted for case verification only; considered if may be consulted for or complemented disease ascertainment (e.g., cause of death from death certificates to complement disease incidence data).
  4. cMedian score (range 0–3) per study, to be interpreted as median public availability of chronic disease outcome metadata in the included studies; e.g., 3 = complete for all outcomes, 2 = complete for some outcomes.
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