Pheochromocytoma in Denmark during 1977–2016: validating diagnosis codes and creating a national cohort using patterns of health registrations

Andreas Ebbehoj, Sarah Jacobsen, Christian Trolle, Maciej Robaczyk, Åse Rasmussen, Ulla Feldt-Rasmussen, Reimar Thomsen, Per Poulsen, Kirstine Stochholm, Esben Søndergaard
  • Clinical Epidemiology, June 2018, Dove Medical Press
  • DOI: 10.2147/clep.s163065

Finding patients with pheochromocytoma - a rare but deadly hormone disease

What is it about?

Pheochromocytoma is a rare hormone disease, which is relatively easy to treat but notoriously difficult for doctors to diagnose. It can be fatal unless found and operated. We identified 588 patients diagnosed with pheochromocytoma from 1977 to 2016 in Denmark using public health registries and algorithms.

Why is it important?

We have found the -as of yet- largest group of pheochromocytoma patients ever identified in a population. This unique patient group can facilitate future research projects, hopefully improving our understanding and enabling faster diagnosis of this rare but dangerous disease

Perspectives

Andreas Ebbehoj (Author)
Aarhus Universitet

Identifying patients and writing this article was an immensely time-consuming and challenging first research project for me. The article mainly describes a scientific methods and is in itself not particularly interesting for doctors or pheochromocytoma patients. However, I hope that follow-up projects will lead to improvements in the management of pheochromocytoma to benefit both patients and doctors. I also hope, that the methods described can inspire researchers from other fields to use health registries for research into rare diseases.

open access logoRead Publication

http://dx.doi.org/10.2147/clep.s163065

The following have contributed to this page: Andreas Ebbehoj

In partnership with: