Table 1 Collected data headings with description
From: Guidance to develop a multidisciplinary, international, pediatric registry: a systematic review
Author | First author of publication |
|---|---|
Publication year | Year article was published |
Year | Year registry started |
Name | Name of registry |
Coverage | Regional, national or international coverage |
Countries involved | Which country/countries were involved in registry |
Number of patients | Number of patients enrolled in registry |
Purpose | Self-defined purpose of registry |
Funding | Was funding procured, who provided funding, benefits and pitfalls |
Governance | Where committees present, what members |
Legal | What legal basis was provided |
Security | How patient data was secured and stored |
Registry team | Was a registry team used, for what tasks |
Design | What type of design was used for registry, what are benefits per design |
Quality checks | What type of quality checks were used, benefits and pitfalls |
Answer options | The types of answer options used for data entries |
Data entries | Who performed data entries |
Linkage | Where data linked to other databases and how |
Completeness | How was data completeness improved |
Participation | How was participation increased |
Benchmarking | Where benchmarking reports created, with what effect |