Outcomes

• An integrated and harmonized set of instruments to assess and monitor socio-economic burden and HRQOL of patients affected by RD and their caregivers.
• A detailed analysis of the services (health and social care) received by people with specific RD in different EU countries, including the identification of formal and informal care.
• A report on the current socioeconomic and HRQOL status of RD patients and caregivers for the selected RD and EU countries.
• The results and deliverables that emerge from this project will stimulate the future comparability and monitoring of RD in Europe as well as anticipate future information needs.

The outcomes will be made readily accessible and posted on the websites of the participating Patient Associations, BURQOL-RD, EUROPLAN and EC public web-sites. The outcomes will also be distributed to health policy makers in the EU, while the scientific outcomes will be disseminated by means of scientific papers and meetings.