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A Nationwide Population-Based Approach to Study Health-Related and Psychosocial Aspects of Neurofibromatosis Type 1

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Annual rept. 1 Jul 2014-30 Jul 2015

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Using the unique resources for conducting epidemiological research in Denmark, we suggest carrying out seven studies in this research project with the overall objective of evaluating health-related and psychosocial aspects of NF1 in a large population-based setting. Studies 1-5 are register-based studies, study 6 a questionnaire study, and study 7 an interview study. Within this first year, 1 we accomplished to receive all approvals for this project i.e., the data approval from the Danish Data Protection Agency, the approval from the local Institutional Review Board IRB, and the initial approval from HRPO for all register-based studies 1-5, 2 we have prepared for data linkages by updating the clinical NF1 study cohort of patients affiliated to the two national Centers for Rare Diseases in Denmark, by preparing a list of variables needed from the respective population-based registries to run the approved register-based studies 1-5, and by sending an request to Statistics Denmark to obtain these data, 3 we have hired a scientific assistant for two years to-be-named in our grant application to be part of the staff on this project start Sept 1, 2015, and 4 finally, we have held a kick-off meeting at our research center with participants being all colleagues within the research center involved in this project as well as the three unpaid consultants i.e., two clinical experts in NF1 from the two Rare Disease Clinics in Denmark and a clinical geneticist with expertise in ethical aspects.

Subject Categories:

  • Psychology
  • Anatomy and Physiology
  • Medicine and Medical Research

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