[Pain registries and similar data collections : A systematic review]

Area of Science:

• Health Services Research
• Pain Medicine
• Data Science

Background:

• Registries offer valuable real-world treatment data, complementing prospective studies.
• Few comprehensive data collections currently exist for pain medicine research.

Purpose of the Study:

• To identify German-language registries or data collections.
• To find registries that record patient-reported outcomes and pain-associated data alongside other information.

Main Methods:

• Systematic literature search across PubMed/MEDLINE, Embase, DRKS, ClinicalTrials.gov, and registry portals.
• Extended internet search via Google Scholar and personal scientific contacts.
• Questionnaires sent to registry operators for data validation.

Main Results:

• 381 initial search hits were evaluated, with 37 projects receiving questionnaires.
• 23 registries met inclusion criteria, categorized as primarily pain-associated (5), therapy-associated (3), population-associated (2), and disease-associated (13).
• Disease-associated registries included rheumatism/arthritis (5), joints/spine (4), hernias (1), and cancer (3).

Conclusions:

• Provides contact information for relevant pain-associated data collections, including their content, objectives, and pain assessment tools.
• Aims to foster increased networking within health services research on pain.
• Identified challenges include inconsistent registry definitions, outdated portals, and missing publications.