A Nationwide Population-Based Approach to Study Health-Related and Psychosocial Aspects of Neurofibromatosis Type 1
Abstract
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.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jul 01, 2015
- Accession Number
- ADA622640
Entities
People
- Jeanette F. Winther
Organizations
- Danish Cancer Society Research Center