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

• López-Bastida J, Oliva-Moreno J, Linertová R, Serrano-Aguilar P. Social/Economic Costs and Health-Related Quality of Life in Patients with Rare Diseases in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:1-5.
• Karine Chevreul, Morgane Michel, Karen Berg Brigham, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Ulf Persson, Giovani Fattore and BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Cystic Fibrosis in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:7-18.
• Marianna Cavazza, Yllka Kodra, Patrizio Armeni, Marta De Santis, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore and BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Duchenne Muscular Dystrophy in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:19-29.
• 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. Social/Economic Costs and Health-Related Quality of Life in Patients with Epidermolysis Bullosa in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:31-42.
• Karine Chevreul, Coralie Gandré, Karen Berg Brigham, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Lászlo Gulácsi, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Ulf Persson, Giovani Fattore and BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Fragile X Syndrome in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:43-52.
• Marianna Cavazza, Yllka Kodra, Patrizio Armeni, Marta De Santis, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Lászlo Gulácsi, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore and BURQOL-RD Research Network. Social/Economic Costs and Quality of Life in Patients with Haemophilia in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:53-65.
• Georgi Iskrov, Itziar Astigarraga, Rumen Stefanov, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Arrigo Schieppati, Domenica Taruscio, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore and BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Histiocytosis in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:67-78.
• Kuhlmann A, Schmidt T, Treskova M, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P, Posada-de-la-Paz M, Kanavos P, Taruscio D, Schieppati A, Iskrov G, Péntek M, Delgado C, von der Schulenburg JM, Persson U, Chevreul K, Fattore G and the BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Juvenile Idiopathic Arthritis in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:79-87.
• Márta Péntek, Lászlo Gulácsi, Brodszky V, Baji P, Boncz I, Gábor Pogány, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Georgi Iskrov, Arrigo Schieppati, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Karine Chevreul, Ulf Persson, Giovanni Fattore and BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life of Mucopolysaccharidosis Patients and Their Caregivers in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:89-98.
• Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Manuel Posada-de-la-Paz, Pedro Serrano-Aguilar, Kanavos P, Taruscio D, Schieppati A, Iskrov G, Baji P, Delgado C, von der Schulenburg JM, Persson U, Chevreul K, Fattore G and the BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Prader-Willi Syndrome in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:99-108.
• Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Panos Kanavos, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Claudia Delgado, von der Johann Mathias Schulenburg, Ulf Persson, Karine Chevreul, Giovanni Fattore and the BURQOL-RD Research Network. Social/Economic Costs and Health-Related Quality of Life in Patients with Scleroderma in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:109-117.

Publications

Chevreul K, Berg Brigham K, Brunn M, des Portes V; BURQOL-RD Research Network. Fragile X syndrome: economic burden and health-related quality of life of patients and caregivers in France. J Intellect Disabil Res. 2015 Sep 15.

​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.

Chevreul K, Berg Brigham K, Michel M, Rault G; BURQOL-RD Research Network. Costs and health-related quality of life of patients with cystic fibrosis and their carers in France. J Cyst Fibros. 2015 May;14(3):384-91.

Iskrov GG, Stefanov RS, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P; BURQOL-RD Research Network. Economic Burden And Health-Related Quality Of Life Of Patients With Cystic Fibrosis In Bulgaria.Folia Med (Plovdiv). 2015 Jan-Mar;57(1):56-64.

Chevreul K, Brigham KB, Gandré C, Mouthon L; BURQOL-RD Research Network. The economic burden and health-related quality of life associated with systemic sclerosis in France. Scand J Rheumatol. 2015 May;44(3):238-46.

Serrano-Aguilar P, Linertová R, Posada-de-la-Paz M, Lopez-Bastida J, Gonzalez-Hernandez N, Taruscio D, BURQOL-RD Research Network. Recruitment procedures for descriptive socio-economic studies in rare diseases. The BURQOL-RD project. Expert Opinion on Orphan Drugs. 2015;3(7):759-65.

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.

Péntek M, Kosztolányi G, Melegh B, Halász A, Pogány G, Baji P, Brodszky V, Vártokné Hevér N, Boncz I, Gulácsi L. [Cystic fibrosis -- disease burden and health-related quality of life of patients and their caregivers: results of the European BURQOL-RD survey in Hungary]. Orv Hetil. 2014 Oct 19;155(42):1673-84. [Hungarian]

Kodra Y, Cavazza M, Schieppati A, De Santis M, Armeni P, Arcieri R, Calizzani G, Fattore G, Manzoli L, Mantovani L, Taruscio D. The social burden and quality of life of patients with haemophilia in Italy. Blood Transfus. 2014 Apr;12 Suppl 3:s567-75.

López-Bastida J, Linertová R, Oliva-Moreno J, Posada-de-la-Paz M, Serrano-Aguilar P. Social economic costs and health-related quality of life in patients with systemic sclerosis in Spain.  Arthritis Care Res (Hoboken). 2014 Mar;66(3):473-80.

Linertová R, Serrano-Aguilar P, Posada-de-la-Paz M, Hens-Pérez M, Kanavos P, Taruscio D, Schieppati A, Stefanov R, Péntek M, Delgado C, Graf von der Schulenburg JM, Persson U, Chevreul K, Fattore G, Worbes-Cerezo M, Sefton M, López-Bastida J; on behalf of BURQOL-RD Research Group. Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study. Health Policy. 2012;108:19–26.

Linertová R, Valcárcel-Nazco C, Posada-De-la-Paz M, López-Bastida J, Serrano-Aguilar P, BURQOL-RD Research Network. Disability evaluation in patients with rare diseases in Spain: the importance of being in accord. BURQOL-RD Project. Rare Dis Orphan Drugs. 2016;3(1):5-10.

Related Publications

López-Bastida J, Perestelo-Pérez L, Montón-Alvarez F, Serrano-Aguilar P, Alfonso-Sanchez JL .2009.Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain. Amyotroph Lateral Scler, 10:237-43.

López-Bastida J, Perestelo-Pérez L, Montón-Alvarez F, Serrano-Aguilar P. 2008.Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain. Mov Disord, 23(2):212-7.

Serrano-Aguilar PG, Lopez-Bastida J, Yanes-Lopez V. 2006.Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer´s disease. Neuroepidemiology 27:136-42.

Caliandro P, Grugni G, Padua L, Kodra Y, Tonali P, Gargantini L, Ragusa L, Crinò, Taruscio D. 2007. Quality of life assessment in a sample of patients affected by Prader-Willi syndrome. J Paediatr Child Health, 43::826-30.

Kodra Y, Giustini S, Divona L, Porciello R, Calvieri S, Wolkenstein P, Taruscio D. 2009. Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients. Dermatology, 218:215-20.