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Establishing a vali...
Establishing a valid cohort of patients with acromegaly by combining the national patient register with the Swedish pituitary register
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- Robért, Jonas (author)
- Linköping University,Linköpings universitet,Avdelningen för diagnostik och specialistmedicin,Medicinska fakulteten,Region Östergötland, Endokrinmedicinska kliniken
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- Tsatsaris, E. (author)
- Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University Hospital, Uppsala University, Uppsala, Sweden,Uppsala Univ, Sweden
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- Berinder, K. (author)
- Karolinska Institute,Karolinska Institutet,Karolinska Univ Hosp, Sweden; Karolinska Inst, Sweden,Karolinska University Hospital
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- Bonelli, L. (author)
- Department of Endocrinology, Skåne University Hospital Malmö, Lund University, Malmö, Sweden,Lund Univ, Sweden
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- Burman, P. (author)
- Lund University,Lunds universitet,Translationell muskelforskning,Forskargrupper vid Lunds universitet,Translational Muscle Research,Lund University Research Groups,Skåne University Hospital
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- Dahlqvist, Per (author)
- Umeå University,Umeå universitet,Institutionen för folkhälsa och klinisk medicin,Umea Univ, Sweden
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- Höybye, C. (author)
- Karolinska Institute,Karolinska Institutet,Karolinska Univ Hosp, Sweden; Karolinska Inst, Sweden,Karolinska University Hospital
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- Olsson, Daniel S, 1983 (author)
- Gothenburg University,Göteborgs universitet,Institutionen för medicin, avdelningen för invärtesmedicin och klinisk nutrition,Institute of Medicine, Department of Internal Medicine and Clinical Nutrition
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- Ragnarsson, Oskar, 1971 (author)
- Gothenburg University,Göteborgs universitet,University of Gothenburg,Sahlgrenska University Hospital,Sahlgrenska Academy,Institutionen för medicin, avdelningen för invärtesmedicin och klinisk nutrition,Institute of Medicine, Department of Internal Medicine and Clinical Nutrition
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- Vouzouneraki, Konstantina (author)
- Umeå University,Umeå universitet,Institutionen för folkhälsa och klinisk medicin,Umea Univ, Sweden
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- Åkerman, A.-K. (author)
- Örebro University,Örebro University Hospital
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- Ekman, Bertil (author)
- Linköping University,Linköpings universitet,Avdelningen för diagnostik och specialistmedicin,Medicinska fakulteten,Region Östergötland, Endokrinmedicinska kliniken
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- Edén Engström, B. (author)
- Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University Hospital, Uppsala University, Uppsala, Sweden,Uppsala Univ, Sweden
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(creator_code:org_t)
- Springer, 2024
- 2024
- English.
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In: Journal of Endocrinological Investigation. - : Springer. - 0391-4097 .- 1720-8386. ; 47:4, s. 995-1003
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Abstract
Subject headings
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- Purpose: 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).Methods: Patients ≥ 18 years 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´s 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.Results: 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 1991–2018 was calculated to 4.0/million/year in the entire population and 5.1/million/year among subjects ≥ 18 years of age.Conclusion: The combination of the SPR and NPR established a valid cohort of patients diagnosed with acromegaly and increased the estimated incidence in Sweden.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Endokrinologi och diabetes (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Endocrinology and Diabetes (hsv//eng)
Keyword
- Acromegaly
- ICD codes
- Incidence
- Patient register
- Acromegaly
- ICD codes
- Incidence
- Patient register
Publication and Content Type
- ref (subject category)
- art (subject category)
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- By the author/editor
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Robért, Jonas
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Tsatsaris, E.
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Berinder, K.
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Bonelli, L.
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Burman, P.
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Dahlqvist, Per
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show more...
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Höybye, C.
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Olsson, Daniel S ...
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Ragnarsson, Oska ...
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Vouzouneraki, Ko ...
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Åkerman, A.-K.
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Ekman, Bertil
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Edén Engström, B ...
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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Endocrinology an ...
- Articles in the publication
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Journal of Endoc ...
- By the university
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Umeå University
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Karolinska Institutet
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Linköping University
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Lund University
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University of Gothenburg