Table 5 Published chronic disease outcome metadata in the included studies (n = 16)^a.

CARLA

All metadata described for some outcomes^{26,27,28,29,30,31}

All metadata described (incl. links to scientific publications, data documents)³²

Partial metadata described³³

Data dictionaries; partial metadata described³⁴

Availability: yes;

Accessibility: metadata (data dictionary) accessible without registration³²

Complete metadata for all outcomes

DEGS1

Partial metadata described^30,35,36

Partial metadata described; links to scientific publications and data documents³⁷

Not found

Variable list for all prevalent outcomes (baseline only); partial metadata described³⁸

Availability: yes;

Accessibility: metadata (DEGS1 data dictionary) accessible without registration³⁸

Partial metadata

DONALD

Partial metadata described^{39,40,41,42,43,44,45,46,47,48}

Partial metadata described; links to scientific publications⁴⁹

Partial metadata described; links to website and scientific publications^50,51,52,53

Not found

Availability: no

Partial metadata

EPIC-Heidelberg

All metadata described for some outcomes^{30,54,55,56,57,58,59,60,61,62,63,64,65}

Partial metadata described; links to scientific publications^66,67

Not found

Not found

Availability: no; application process to obtain (meta-)data is described⁶⁸

Complete metadata for some outcomes

EPIC- Potsdam

All metadata described for some outcomes^{30,55,56,69,70,71,72,73,74,75,76,77}

Partial metadata described; links to scientific publications^67,78

Partial metadata described; links to scientific publications^50,51,52,53

Not found

Availability: no; application process to obtain data is described⁶⁸

Complete metadata for some outcomes

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

All metadata described; questionnaires available as annex^79,80,81,82

Partial metadata described; links to scientific publications and data documents^83,84

Not found

Variable list and questionnaire up to 2019/2020 with all metadata described^38,79,82

Availability: yes;

Accessibility: metadata (data dictionary) accessible without registration³⁸

Complete metadata for all outcomes

GHS

All metadata described for some outcomes^{30,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100}

Partial metadata described¹⁰¹

Not found

Not found

Availability: no

Complete metadata for some outcomes

GNHIES98 (BGS98)

Partial metadata described¹⁰²

Partial metadata described; links to scientific publications and data documents¹⁰³

Not found

Variable list with partial metadata described³⁸

Availability: yes;

Accessibility: metadata (data dictionary) accessible without registration³⁸

Partial metadata

HCHS

Partial metadata described^{104,105,106,107}

No metadata described; links to scientific publications^105,108

Partial metadata described; links to website, scientific publications¹⁰⁹

Not found

Availability: yes;

Accessibility: no (credentials needed; no registration option)¹¹⁰

Partial metadata

HNRS

Partial metadata described^{30,111,112,113,114,115,116,117,118,119,120,121,122}

Partial metadata described¹²³

Partial metadata described; links to scientific publications¹²⁴

Not found

Availability: no

Partial metadata

IDEFICS/ I.Family

All metadata described for some outcomes^{116,125,126,127,128}

Partial metadata described; links to scientific publications^129,130,131

Partial metadata described; links to scientific publications^51,132,133

SOPs with partial metadata described^125,134

Availability: yes;

Accessibility: metadata (SOPs, questionnaires) accessible after guest registration (temporary access)¹³⁴

Complete metadata for some outcomes

KORA

Partial metadata described

refs. ^{30,135,136,137,138,139,140,141,142,143,144}

Partial metadata described; links to scientific publications

ref. ¹⁴⁵

Partial metadata described

ref. ¹⁴⁶

Variable lists with partial metadata described

ref. ¹⁴⁷

Availability: yes;

Accessibility: metadata (variable lists) accessible after registration

ref. ¹⁴⁷

Complete metadata for all outcomes

lidA

Partial metadata described¹⁴⁸

Partial metadata described; links to scientific publications¹⁴⁹

Not found

Data reports with partial metadata¹⁵⁰

Availability: yes;

Accessibility: metadata (reports with variable descriptions) accessible without registration¹⁵⁰

Complete metadata for all outcomes

LIFE-Adult

Partial metadata described^151,152,153

Partial metadata described; links to scientific publications¹⁵⁴

Partial metadata described; links to study website¹⁵⁵

Data dictionaries with partial metadata¹⁵⁶

Availability: yes;

Accessibility: metadata (data dictionaries) accessible after registration¹⁵⁶

Partial metadata

NAKO

All metadata described for all outcomes^{157,158,159,160,161}

Partial metadata described; links to scientific publications¹⁶²

Partial metadata described; links to study website linking to scientific publications¹⁶³

Data dictionary with some metadata described¹⁶⁴

Availability: yes;

Accessibility: metadata (data dictionary) accessible without registration; registration is also possible¹⁶⁴

Complete metadata for all outcomes

SHIP/SHIP Trend

Partial metadata described^{30,165,166,167,168,169,170,171,172,173,174,175,176,177,178,179,180,181,182}

Partial metadata described; links to scientific publications and data documents¹⁸³

Partial metadata described; links to scientific publications and study website^{33,53,146,163,184,185,186}

Interview and study examination forms, data dictionaries with partial metadata described^183,187

Availability: yes;

Accessibility: metadata (data dictionaries) accessible without registration¹⁸⁷

Complete metadata for all outcomes