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Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.

Publikation: KonferencebidragKonferenceabstrakt til konferenceForskning

Standard

Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations. / Ebbehoj, A; Jacobsen, Sarah Forslund; Trolle, Christian; Grzegorz Robaczyk, Maciej; Rasmussen, Åse K.; Feldt-Rasmussen, Ulla; Thomsen, Reimar W.; Poulsen, Per Løgstrup; Krag, Kirstine Stochholm; Søndergaard, Esben.

2018. Abstract fra Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark.

Publikation: KonferencebidragKonferenceabstrakt til konferenceForskning

Harvard

Ebbehoj, A, Jacobsen, SF, Trolle, C, Grzegorz Robaczyk, M, Rasmussen, ÅK, Feldt-Rasmussen, U, Thomsen, RW, Poulsen, PL, Krag, KS & Søndergaard, E 2018, 'Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.', Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark, 12/01/2018 - 13/01/2018.

APA

Ebbehoj, A., Jacobsen, S. F., Trolle, C., Grzegorz Robaczyk, M., Rasmussen, Å. K., Feldt-Rasmussen, U., Thomsen, R. W., Poulsen, P. L., Krag, K. S., & Søndergaard, E. (2018). Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.. Abstract fra Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark.

CBE

Ebbehoj A, Jacobsen SF, Trolle C, Grzegorz Robaczyk M, Rasmussen ÅK, Feldt-Rasmussen U, Thomsen RW, Poulsen PL, Krag KS, Søndergaard E. 2018. Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations. Abstract fra Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark.

MLA

Ebbehoj, A o.a.. Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.. Dansk Endokrinologisk Selskabs Årsmøde 2018, 12 jan. 2018, Odense, Danmark, Konferenceabstrakt til konference, 2018.

Vancouver

Ebbehoj A, Jacobsen SF, Trolle C, Grzegorz Robaczyk M, Rasmussen ÅK, Feldt-Rasmussen U o.a.. Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.. 2018. Abstract fra Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark.

Author

Ebbehoj, A ; Jacobsen, Sarah Forslund ; Trolle, Christian ; Grzegorz Robaczyk, Maciej ; Rasmussen, Åse K. ; Feldt-Rasmussen, Ulla ; Thomsen, Reimar W. ; Poulsen, Per Løgstrup ; Krag, Kirstine Stochholm ; Søndergaard, Esben. / Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations. Abstract fra Dansk Endokrinologisk Selskabs Årsmøde 2018, Odense, Danmark.

Bibtex

@conference{23f6edf8ba4b4602ab55e3c34f98f008,
title = "Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.",
abstract = "IntroductionPheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare, but potentially life-threatening tumors. We aimed to create a national cohort of incident PPGL patients by linking data from the national health registries for later studies on the morbidity and mortality of PPGL.Patients and methods: We obtained data from the Danish National Registry of Patients, the National Pathology Registry and the Danish Registry of Causes of Death for all persons registered with pheochromocytoma or catecholamine-hypersecretion in Denmark 1977-2016. We then reviewed health records for all persons living in the North and Central Regions of Denmark to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPV) and completeness. The best algorithm was validated in an external sample of 110 algorithm-positive patients.Results: We identified 2626 persons with a PPGL diagnosis code in Denmark, including 787 (30.0%) in North and Central Denmark. We retrieved the health records of 771/787 (98.0%) persons and confirmed 198 incident PPGL patients (25.3%). By combining patterns of registrations, we created an algorithm with a PPV for PPGL of 93.1% (CI95%: 88.5-96.3) and completeness of 88.9% (CI95%: 83.7-92.9), thus creating a national PPGL cohort of 587 patients. PPV for the optimal algorithm was 94.3% (CI95%: 87.1-98.1) in the external validation sample.Conclusion: Diagnosis codes for pheochromocytoma had a low validity in several individual health registries. However, with a combination of registries we could identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.",
keywords = "Pheochromocytoma, Validation study, Registerbased research, Nationwide",
author = "A Ebbehoj and Jacobsen, {Sarah Forslund} and Christian Trolle and {Grzegorz Robaczyk}, Maciej and Rasmussen, {{\AA}se K.} and Ulla Feldt-Rasmussen and Thomsen, {Reimar W.} and Poulsen, {Per L{\o}gstrup} and Krag, {Kirstine Stochholm} and Esben S{\o}ndergaard",
year = "2018",
month = jan,
day = "12",
language = "English",
note = "Dansk Endokrinologisk Selskabs {\AA}rsm{\o}de 2018, DES {\AA}rsm{\o}de 2018 ; Conference date: 12-01-2018 Through 13-01-2018",

}

RIS

TY - ABST

T1 - Pheochromocytoma in Denmark 1977-2016: Identifying a national cohort using patterns of health registrations.

AU - Ebbehoj, A

AU - Jacobsen, Sarah Forslund

AU - Trolle, Christian

AU - Grzegorz Robaczyk, Maciej

AU - Rasmussen, Åse K.

AU - Feldt-Rasmussen, Ulla

AU - Thomsen, Reimar W.

AU - Poulsen, Per Løgstrup

AU - Krag, Kirstine Stochholm

AU - Søndergaard, Esben

N1 - Conference code: 32

PY - 2018/1/12

Y1 - 2018/1/12

N2 - IntroductionPheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare, but potentially life-threatening tumors. We aimed to create a national cohort of incident PPGL patients by linking data from the national health registries for later studies on the morbidity and mortality of PPGL.Patients and methods: We obtained data from the Danish National Registry of Patients, the National Pathology Registry and the Danish Registry of Causes of Death for all persons registered with pheochromocytoma or catecholamine-hypersecretion in Denmark 1977-2016. We then reviewed health records for all persons living in the North and Central Regions of Denmark to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPV) and completeness. The best algorithm was validated in an external sample of 110 algorithm-positive patients.Results: We identified 2626 persons with a PPGL diagnosis code in Denmark, including 787 (30.0%) in North and Central Denmark. We retrieved the health records of 771/787 (98.0%) persons and confirmed 198 incident PPGL patients (25.3%). By combining patterns of registrations, we created an algorithm with a PPV for PPGL of 93.1% (CI95%: 88.5-96.3) and completeness of 88.9% (CI95%: 83.7-92.9), thus creating a national PPGL cohort of 587 patients. PPV for the optimal algorithm was 94.3% (CI95%: 87.1-98.1) in the external validation sample.Conclusion: Diagnosis codes for pheochromocytoma had a low validity in several individual health registries. However, with a combination of registries we could identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.

AB - IntroductionPheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare, but potentially life-threatening tumors. We aimed to create a national cohort of incident PPGL patients by linking data from the national health registries for later studies on the morbidity and mortality of PPGL.Patients and methods: We obtained data from the Danish National Registry of Patients, the National Pathology Registry and the Danish Registry of Causes of Death for all persons registered with pheochromocytoma or catecholamine-hypersecretion in Denmark 1977-2016. We then reviewed health records for all persons living in the North and Central Regions of Denmark to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPV) and completeness. The best algorithm was validated in an external sample of 110 algorithm-positive patients.Results: We identified 2626 persons with a PPGL diagnosis code in Denmark, including 787 (30.0%) in North and Central Denmark. We retrieved the health records of 771/787 (98.0%) persons and confirmed 198 incident PPGL patients (25.3%). By combining patterns of registrations, we created an algorithm with a PPV for PPGL of 93.1% (CI95%: 88.5-96.3) and completeness of 88.9% (CI95%: 83.7-92.9), thus creating a national PPGL cohort of 587 patients. PPV for the optimal algorithm was 94.3% (CI95%: 87.1-98.1) in the external validation sample.Conclusion: Diagnosis codes for pheochromocytoma had a low validity in several individual health registries. However, with a combination of registries we could identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.

KW - Pheochromocytoma

KW - Validation study

KW - Registerbased research

KW - Nationwide

M3 - Conference abstract for conference

T2 - Dansk Endokrinologisk Selskabs Årsmøde 2018

Y2 - 12 January 2018 through 13 January 2018

ER -