Questionnaires
Objectives
- To generate a methodological framework to measure the socio-economic burden of RD.
- To define a methodological framework to measure the HRQOL of RD.
- To develop unified instruments to gather information on the socio-economic burden and HRQOL of RD throughout Europe.
- To perform a pilot study measuring the socio-economic burden and HRQOL for selected RD.
- To refine and package the tools developed for continued and more extensive costs and HRQOL studies of RD.
* The collaboration of national patient association and federations for the specific RDs to be addressed in the project is fundamental to ensure that all the objectives proposed are successfully reached.