{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T13:37:10Z","timestamp":1767706630758},"reference-count":21,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,5,27]],"date-time":"2024-05-27T00:00:00Z","timestamp":1716768000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,5,27]],"date-time":"2024-05-27T00:00:00Z","timestamp":1716768000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100017590","name":"Universit\u00e4tsklinikum Essen","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100017590","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>The selection of data elements is a decisive task within the development of a health registry. Having the right metadata is crucial for answering the particular research questions. Furthermore, the set of data elements determines the registries\u2019 readiness of interoperability and data reusability to a major extent. Six health registries shared and published their metadata within a German funding initiative. As one step in the direction of a common set of data elements, a selection of those metadata was evaluated with regard to their appropriateness for a broader usage.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Each registry was asked to contribute a 10%-selection of their data elements to an evaluation sample. The survey was set up with the online survey tool \u201eLimeSurvey Cloud\u201d. The registries and an accompanying project participated in the survey with one vote for each project. The data elements were offered in content groups along with the question of whether the data element is appropriate for health registries on a broader scale. The question could be answered using a Likert scale with five options. Furthermore, \u201cno answer\u201d was allowed. The level of agreement was assessed using weighted Cohen\u2019s kappa and Kendall\u2019s coefficient of concordance.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>The evaluation sample consisted of 269 data elements. With a grade of \u201cperhaps recommendable\u201d or higher in the mean, 169 data elements were selected. These data elements belong preferably to groups\u2019 demography, education\/occupation, medication, and nutrition. Half of the registries lost significance compared with their percentage of data elements in the evaluation sample, one remained stable. The level of concordance was adequate.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The survey revealed a set of 169 data elements recommended for health registries. When developing a registry, this set could be valuable help in selecting the metadata appropriate to answer the registry\u2019s research questions. However, due to the high specificity of research questions, data elements beyond this set will be needed to cover the whole range of interests of a register. A broader discussion and subsequent surveys are needed to establish a common set of data elements on an international scale.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12911-024-02535-x","type":"journal-article","created":{"date-parts":[[2024,5,27]],"date-time":"2024-05-27T09:02:08Z","timestamp":1716800528000},"update-policy":"http:\/\/dx.doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Recommended data elements for health registries: a survey from a German funding initiative"],"prefix":"10.1186","volume":"24","author":[{"given":"Sonja","family":"Harkener","sequence":"first","affiliation":[]},{"given":"Ekkehart","family":"Jenetzky","sequence":"additional","affiliation":[]},{"given":"R\u00fcdiger","family":"Rupp","sequence":"additional","affiliation":[]},{"given":"Jennifer","family":"Dell","sequence":"additional","affiliation":[]},{"given":"Christoph","family":"Engel","sequence":"additional","affiliation":[]},{"given":"Maximilian Ferry","family":"von Bargen","sequence":"additional","affiliation":[]},{"given":"Robert","family":"Finger","sequence":"additional","affiliation":[]},{"given":"Maximilian","family":"Glienke","sequence":"additional","affiliation":[]},{"given":"Carsten","family":"Heinz","sequence":"additional","affiliation":[]},{"given":"Patrick","family":"Jersch","sequence":"additional","affiliation":[]},{"given":"David","family":"Martin","sequence":"additional","affiliation":[]},{"given":"Rita","family":"Schmutzler","sequence":"additional","affiliation":[]},{"given":"Martin","family":"Sch\u00f6nthaler","sequence":"additional","affiliation":[]},{"given":"Barbara","family":"Suwelack","sequence":"additional","affiliation":[]},{"given":"Jeannine","family":"Wegner","sequence":"additional","affiliation":[]},{"given":"J\u00fcrgen","family":"Stausberg","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2024,5,27]]},"reference":[{"key":"2535_CR1","doi-asserted-by":"crossref","unstructured":"Glicklich RE, Leavy MB, Dreyer NA, editors. Registries for evaluating patient outcomes: a user\u2019s guide. 4th ed. AHRQ Publication No. 19(20)-EHC020. Rockville, MD: Agency for Healthcare Research and Quality; September 2020.","DOI":"10.23970\/AHRQEPCREGISTRIES4"},{"key":"2535_CR2","first-page":"288","volume":"82","author":"J Stausberg","year":"2020","unstructured":"Stausberg J, Maier B, Bestehorn K, Gothe H, Groene O, Jacke C, J\u00e4nicke M, Kostuj T, Mathes T, Niemeyer A, Olbrich K, Schmitt J, Neugebauer E. Memorandum Registry for Health Services Research: Update 2019. Das Gesundheitswesen. 2020;82:288\u201392. [in German].","journal-title":"Das Gesundheitswesen"},{"key":"2535_CR3","volume-title":"Methodological guidelines and recommendations for efficient and rational governance of patient registries","year":"2015","unstructured":"Zaletel M, Kralj M, editors. Methodological guidelines and recommendations for efficient and rational governance of patient registries. 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The research was carried out by the authors as described in the contribution\u2019s section exclusively including data elements as material. An ethical approval was therefore not required.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"136"}}