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

Research output: Contribution to conferenceConference abstract for conferenceResearch

  • A Ebbehoj
  • Sarah Forslund Jacobsen, Department of Medical Endocrinology, Rigshospitalet, Copenhagen, Denmark, Denmark
  • Christian Trolle
  • Maciej Grzegorz Robaczyk, Department of Endocrinology, Aalborg University Hospital, Aalborg, Denmark., Denmark
  • Åse K. Rasmussen, Department of Medical Endocrinology, Rigshospitalet, Copenhagen, Denmark, Denmark
  • Ulla Feldt-Rasmussen, Department of Medical Endocrinology, Rigshospitalet, Copenhagen, Denmark, Denmark
  • Reimar W. Thomsen
  • Per Løgstrup Poulsen
  • Kirstine Stochholm Krag
  • Esben Søndergaard
Pheochromocytoma 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.
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.
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.
Original languageEnglish
Publication year12 Jan 2018
Publication statusPublished - 12 Jan 2018
EventDansk Endokrinologisk Selskabs Årsmøde 2018 - Odeon, Odense, Denmark
Duration: 12 Jan 201813 Jan 2018
Conference number: 32


ConferenceDansk Endokrinologisk Selskabs Årsmøde 2018

    Research areas

  • Pheochromocytoma, Validation study, Registerbased research, Nationwide

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