Despite the low prevalence of Rare Diseases (RD) (5/10,000 persons), more than 5000 RD are recognised and hence, over 30 million EU citizens suffer from these conditions. Most cases RD are life-threatening, chronic and debilitating, requiring long term specialist and costly formal and informal care. The lack of effective diagnoses and treatments often underlies the shortened life expectancy and quality of life of these patients. These characteristics mean that RD require the combined efforts of health and social care professionals, politicians, managers and researchers to increase the availability of effective disease management tools to improve care and to extend both life expectancy and Health Related Quality of Life (HRQOL).
The main aim of BURQOL-RD is to generate a model to quantify the socio-economic costs and HRQOL, of both patients and caregivers, for ten RD in eight different European countries. This model is adaptable and sufficiently sensitive to capture the differences in the distinct Health and Social Care Systems in the EU Member States. As such the BURQOL-RD model provides an integrated and harmonised means to assess the impact of new public health policies, interventions and treatments for RD “in” and “among” EU Member States.
Funder: European Union - 2nd Programme of Community Action in the Field of Public Health
- Canary Foundation of Investigation and Health (FUNCIS), Spain (Coordinator)
- Instituto de Salud Carlos III (ISCIII) – Research Institute for Rare Diseases (IIER), Spain
- Instituto Superiore di Sanita (ISS), Italy
- London School of Economics and Political Science (LSE-Health), UK
- Bulgarian Association for Promotion of Education and Science (BAPES), Bulgaria Federación Española de Enfermedades Raras (FEDER), Spain
- Leibniz University Hannover (LUH). Germany
- The Swedish Institute for Health Economics (IHE), Sweden
- Universita Commerciale “Luigi Bocconi” (Bocconi), Italy
- University Paris Val de Marne (UPVM), France
- Centre for Public Affairs Studies Foundation (CPASF), Hungary
- Mario Negri Institute for Pharmacological Research (IRFMN), Italy
MTRG team members: Panos Kanavos, Aris Angelis and David Tordrup
Angelis A, Kanavos P, López-Bastida J, Linertová R, Nicod E, Serrano-Aguilar P; BURQOL-RD Research Network. Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom. BMC Health Serv Res. 2015 Sep 28;15(1):428.
Angelis A, Tordrup D, Kanavos P. Socio-economic burden of rare diseases: A systematic review of cost of illness evidence. Health Policy. 2015 Jul;119(7):964-79.
Social/Economic Costs and Health-Related Quality of Life in Patients with Rare Diseases in Europe - Supplement in European Journal of Health Economics, Volume 17, Issue 1 Supplement, April 2016
Aris Angelis, Panos Kanavos, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Valentin Brodszky, Johann Matthias Graf von der Schulenburg, Karine Chevreul, Ulf Persson, Giovanni Fattore and BURQOL-RD Research Network.
Visit the BURQOL-RD website