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

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Technical Report,01 Jul 2015,30 Jun 2016

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Krftens Bekmpelse, Danish Cancer Society Copenhagen Denmark

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Using the unique resources for conducting epidemiological research in Denmark with personal identification numbers for all citizens and the existence of a number of unique population-based, nationwide administrative registries, we suggest carrying out seven studies 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 the second year, 1 we accomplished to prepare all patient material for study 6 and 7 and to apply for permission from the Human Research Protection Office HRPO for final U.S. approval to conduct these two studies, 2 to select the population comparison group, 3 to send the cases NF1 patients and the population-based comparison cohort to the State Serum Institute and Statistics Denmark to obtain individual-level data on all outcomes data needed to analyze the register-based studies studies 1-5, 4 to have a final dataset ready for analyses for the register-based studies studies 1-5, 5 to start up analyzing and drafting the manuscript for study 1, 6 and to start up drafting the manuscript for study 5.

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