title: [Pain registries and similar data collections : A systematic review].
abstract: BACKGROUND
  Registries and similar data collections are a valuable addition to prospective studies as they provide data from real life treatment. In pain medicine only few such data collections exist so far.
  
  
  OBJECTIVE
  Aim of the study was to identify German-language registries or similar data collections that record patient-reported and pain-associated outcomes together with other data.
  
  
  METHODS
  A systematic search was carried out, which included the following sources: the data bases PubMed/MEDLINE and Embase, the German Registry for Clinical Trials (DRKS), ClinicalTrials.gov and registry portals known to us. Furthermore, an extended internet search was carried out via Google Scholar. References from personal scientific contacts and from operators of registries were also included. Questionnaires regarding registry items were sent to registry operators.
  
  
  RESULTS
  Out of 381 search hits, 37 potentially relevant projects received a questionnaire and 35 answered. From the 35 responders 23 registries or similar data collections fulfilling inclusion criteria could be identified: 5 primarily pain-associated, 3 therapy-associated, 2 population-associated and 13 disease-associated (rheumatism/arthritis 5, joints/spine 4, hernias 1 and cancer 3).
  
  
  CONCLUSIONS
  The reader obtains contact information on relevant data collections associated with pain, the contents, objectives and the pain assessment instruments applied. This review could give an important impulse for increased networking in health services research on pain. A limitation of the study was that identification of registries was made difficult due to an inconsistent definition and application of the term "registry", incomplete or insufficiently updated registry portals, missing scientific publications as well as two non-responders.
authors.affiliation: Institut für Allgemeinmedizin, Universitätsklinikum Jena, Erlanger Allee 101, 07740, Jena, Deutschland.
authors.forename: A
authors.initials: A
authors.lastname: Freytag
authors.affiliation: , Jena, Deutschland.
authors.forename: B
authors.initials: B
authors.lastname: Scriba
authors.affiliation: Universitäts SchmerzCentrum (USC), Universitätsklinikum Carl Gustav Carus, Dresden, Deutschland.
authors.forename: U
authors.initials: U
authors.lastname: Kaiser
authors.affiliation: Klinik für Anästhesiologie und Intensivmedizin, Universitätsklinikum Jena, Erlanger Allee 101, 07740, Jena, Deutschland. winfried.meissner@med.uni-jena.de.|Deutsche Schmerzgesellschaft e.V., Jena, Deutschland. winfried.meissner@med.uni-jena.de.
authors.forename: W
authors.initials: W
authors.lastname: Meißner
mesh_terms: D002986:Clinical Trials as Topic; D003625:Data Collection / Q000706:statistics & numerical data*; D005858:Germany; D006302:Health Services Research; D006801:Humans; D017063:Outcome Assessment, Health Care; D010146:Pain / Q000453:epidemiology*; D059408:Pain Management / Q000379:methods* / Q000706:statistics & numerical data*; D011446:Prospective Studies; D012042:Registries / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires
keywords: Databases; Pain management; Patient outcome assessment, patient-reported; Public health, research; Systematic review