{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T01:41:22Z","timestamp":1791423682352,"version":"4.3.3"},"reference-count":21,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2023,10,18]],"date-time":"2023-10-18T00:00:00Z","timestamp":1697587200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,18]],"date-time":"2023-10-18T00:00:00Z","timestamp":1697587200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100014688","name":"Region Uppsala","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100014688","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100016670","name":"Region \u00d6sterg\u00f6tland","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100016670","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004319","name":"Pfizer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004319","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003945","name":"Link\u00f6ping University","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100003945","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Endocrinol Invest"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>The aim of this study was to establish a valid national cohort of patients diagnosed with acromegaly by combining data from the general National Patient Register (NPR) and the disease-specific Swedish Pituitary Register (SPR).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Patients\u2009\u2265\u200918\u00a0years of age at diagnosis of acromegaly reported from 1991 to 2018 who were registered in the NPR and\/or SPR were included. The diagnosis of acromegaly was considered correct for patients identified in both registers or confirmed through chart review. Medical records were reviewed in two of Sweden\u00b4s six health care regions if the patient was reported only in the NPR. An algorithm for the NPR, with criteria requiring multiple diagnosis registrations and tumour and\/or surgery codes, was constructed to reduce the number of patients to review in the remaining four regions.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>A total of 1866 patients were identified. Among these, 938 were reported in both registers. After application of the algorithm and chart review, the diagnosis was confirmed for 83 of the 906 patients found only in the NPR. Among 22 patients only registered in the SPR, a review of medical records confirmed acromegaly in 13. This resulted in a total of 1034 cases with acromegaly during the study period. The incidence rate of acromegaly in Sweden 1991\u20132018 was calculated to 4.0\/million\/year in the entire population and 5.1\/million\/year among subjects\u2009\u2265\u200918\u00a0years of age.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The combination of the SPR and NPR established a valid cohort of patients diagnosed with acromegaly and increased the estimated incidence in Sweden.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s40618-023-02217-x","type":"journal-article","created":{"date-parts":[[2023,10,18]],"date-time":"2023-10-18T12:02:19Z","timestamp":1697630539000},"page":"995-1003","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Establishing a valid cohort of patients with acromegaly by combining the National Patient Register with the Swedish Pituitary Register"],"prefix":"10.1007","volume":"47","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-3598-4155","authenticated-orcid":false,"given":"J.","family":"Rob\u00e8rt","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-7630-3991","authenticated-orcid":false,"given":"E.","family":"Tsatsaris","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Berinder","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"Bonelli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4844-8336","authenticated-orcid":false,"given":"P.","family":"Burman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P.","family":"Dahlqvist","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C.","family":"H\u00f6ybye","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9734-0786","authenticated-orcid":false,"given":"D. 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Olsson has been a consultant for Sandoz, Ipsen and Pfizer; has received unrestricted grants from Sandoz and Pfizer; and is an employee at AstraZeneca as of 8th August 2021. The other authors have nothing to declare.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This study and the data collection it entailed have been approved by the Regional Ethics Review Board, Uppsala, Sweden (No. 2017\/475). The Swedish Pituitary Register is approved by the Ethics Review Board, Karolinska Institute, Stockholm, Sweden (No. 2003\/515\/03 and No. 2012\/915-32). Patients in the SPR must be informed and given the option to opt out of the register at any time. This study was performed in accordance with the Declaration of Helsinki 1964 and its later amendments.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"No informed consent is required for registration in national quality registers.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}