Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study

Line Kenborg*, Line E. Frederiksen, Michael Galanakis, Karoline Doser, Thomas T. Nielsen, Mia Aagaard Doherty, Hanne Hove, John R. Østergaard, Mette M. Handrup, Cecilie Ejerskov, John J. Mulvihill, Jeanette F. Winther

*Corresponding author for this work

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaperJournal articleResearchpeer-review


Background: Little is known about employment status, occupation, and disposable income in adults with NF1. Methods: From the Danish National Patient Registry and database of two national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980–2019. Results: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61–0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16–3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82–0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. Conclusion: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.

Original languageEnglish
Article number346
JournalOrphanet Journal of Rare Diseases
Number of pages11
Publication statusPublished - Dec 2023


  • Cohort study
  • Denmark
  • Employment status
  • Neurofibromatosis 1
  • Population-based


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