Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal
Author
Abstract
Suggested Citation
Download full text from publisher
References listed on IDEAS
- Marianna Cavazza & Yllka Kodra & Patrizio Armeni & Marta Santis & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Domenica Taruscio & Arr, 2016. "Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 19-29, April.
- Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Manuel Posada-de-la-Paz & Pedro Serrano-Aguilar & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Petra Baji & Clau, 2016. "Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 99-108, April.
- Julio López-Bastida & Juan Oliva-Moreno & Renata Linertová & Pedro Serrano-Aguilar, 2016. "Social/economic costs and health-related quality of life in patients with rare diseases in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 1-5, April.
- 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 Schiep, 2016. "Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 7-18, April.
- 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 & Va, 2016. "Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 31-42, April.
- Linertová, Renata & Serrano-Aguilar, Pedro & Posada-de-la-Paz, Manuel & Hens-Pérez, Manuel & Kanavos, Panos & Taruscio, Domenica & Schieppati, Arrigo & Stefanov, Rumen & Péntek, Márta & Delgado, Claud, 2012. "Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study," Health Policy, Elsevier, vol. 108(1), pages 19-26.
- 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 & , 2016. "Social/economic costs and quality of life in patients with haemophilia in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 53-65, April.
- Mareike Heimeshoff & Helge Hollmeyer & Jonas Schreyögg & Oliver Tiemann & Doris Staab, 2012. "Cost of Illness of Cystic Fibrosis in Germany," PharmacoEconomics, Springer, vol. 30(9), pages 763-777, September.
- 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 Tarusc, 2016. "Social/economic costs and health-related quality of life in patients with histiocytosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 67-78, April.
- A. Kuhlmann & T. Schmidt & M. Treskova & J. López-Bastida & R. Linertová & J. Oliva-Moreno & P. Serrano-Aguilar & M. Posada-de-la-Paz & P. Kanavos & D. Taruscio & A. Schieppati & G. Iskrov & M. Péntek, 2016. "Social/economic costs and health-related quality of life in patients with juvenile idiopathic arthritis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 79-87, April.
- 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 Schiep, 2016. "Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 43-52, April.
- David Moher & Alessandro Liberati & Jennifer Tetzlaff & Douglas G Altman & The PRISMA Group, 2009. "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," PLOS Medicine, Public Library of Science, vol. 6(7), pages 1-6, July.
- 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 & Cl, 2016. "Social/economic costs and health-related quality of life in patients with scleroderma in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 109-117, April.
Citations
Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
Cited by:
- Małgorzata Skweres-Kuchta & Iwona Czerska & Elżbieta Szaruga, 2023. "Literature Review on Health Emigration in Rare Diseases—A Machine Learning Perspective," IJERPH, MDPI, vol. 20(3), pages 1-31, January.
Most related items
These are the items that most often cite the same works as this one and are cited by the same works as this one.- Valentin Brodszky & Zsuzsanna Beretzky & Petra Baji & Fanni Rencz & Márta Péntek & Alexandru Rotar & Konstantin Tachkov & Susanne Mayer & Judit Simon & Maciej Niewada & Rok Hren & László Gulácsi, 2019. "Cost-of-illness studies in nine Central and Eastern European countries," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 155-172, June.
- López-Bastida, J. & Ramos-Goñi, J.M. & Aranda-Reneo, I. & Trapero-Bertran, M. & Kanavos, P. & Rodriguez Martin, B., 2019. "Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?," Health Policy, Elsevier, vol. 123(2), pages 152-158.
- Isaac Aranda-Reneo & Luz María Peña-Longobardo & Juan Oliva-Moreno & Svenja Litzkendorf & Isabelle Durand-Zaleski & Eduardo F. Tizzano & Julio López-Bastida, 2020. "The Burden of Spinal Muscular Atrophy on Informal Caregivers," IJERPH, MDPI, vol. 17(23), pages 1-12, December.
- Alicia Aurora Rodríguez & Óscar Martínez & Imanol Amayra & Juan Francisco López-Paz & Mohammad Al-Rashaida & Esther Lázaro & Patricia Caballero & Manuel Pérez & Sarah Berrocoso & Maitane García & Paul, 2021. "Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease," IJERPH, MDPI, vol. 18(6), pages 1-16, March.
- Yllka Kodra & Marianna Cavazza & Marta de Santis & Andrea Guala & Maria-Elena Liverani & Patrizio Armeni & Maura Masini & Domenica Taruscio, 2020. "Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome," IJERPH, MDPI, vol. 17(16), pages 1-14, August.
- Luz María Peña-Longobardo & Isaac Aranda-Reneo & Juan Oliva-Moreno & Svenja Litzkendorf & Isabelle Durand-Zaleski & Eduardo Tizzano & Julio López-Bastida, 2020. "The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe," IJERPH, MDPI, vol. 17(16), pages 1-12, August.
- Alicia Aurora Rodríguez & Imanol Amayra & Juan Francisco López-Paz & Oscar Martínez & Maitane García & Mónika Salgueiro & Mohammad Al-Rashaida & Paula María Luna & Paula Pérez-Nuñez & Nicole Passi & I, 2022. "The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study," IJERPH, MDPI, vol. 19(19), pages 1-15, September.
- Alvaro Rafael Villar Hernández & Fernando Molero Alonso & Álvaro Jesús Aguado Marín & Manuel Posada de la Paz, 2022. "Transcultural Validation of a Spanish Version of the Quality of Life in Epidermolysis Bullosa Questionnaire," IJERPH, MDPI, vol. 19(12), pages 1-11, June.
- Michela Meregaglia & Elena Nicod & Michael Drummond, 2023. "The estimation of health state utility values in rare diseases: do the approaches in submissions for NICE technology appraisals reflect the existing literature? A scoping review," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(7), pages 1151-1216, September.
- Takeya Adachi & Ayman W. El-Hattab & Ritu Jain & Katya A. Nogales Crespo & Camila I. Quirland Lazo & Maurizio Scarpa & Marshall Summar & Duangrurdee Wattanasirichaigoon, 2023. "Enhancing Equitable Access to Rare Disease Diagnosis and Treatment around the World: A Review of Evidence, Policies, and Challenges," IJERPH, MDPI, vol. 20(6), pages 1-37, March.
- Javier Güeita-Rodriguez & Pilar Famoso-Pérez & Jaime Salom-Moreno & Pilar Carrasco-Garrido & Jorge Pérez-Corrales & Domingo Palacios-Ceña, 2020. "Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study," IJERPH, MDPI, vol. 17(12), pages 1-16, June.
- Marialuisa Saviano & Sergio Barile & Francesco Caputo & Mattia Lettieri & Stefania Zanda, 2019. "From Rare to Neglected Diseases: A Sustainable and Inclusive Healthcare Perspective for Reframing the Orphan Drugs Issue," Sustainability, MDPI, vol. 11(5), pages 1-21, March.
- Petra Baji & Dominik Golicki & Valentina Prevolnik-Rupel & Werner B. F. Brouwer & Zsombor Zrubka & László Gulácsi & Márta Péntek, 2019. "The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 5-16, June.
- Bishal Mohindru & David Turner & Tracey Sach & Diana Bilton & Siobhan Carr & Olga Archangelidi & Arjun Bhadhuri & Jennifer A. Whitty, 2020. "Health State Utility Data in Cystic Fibrosis: A Systematic Review," PharmacoEconomics - Open, Springer, vol. 4(1), pages 13-25, March.
- 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 & Cl, 2016. "Social/economic costs and health-related quality of life in patients with scleroderma in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 109-117, April.
- İlkay Unay-Gailhard & Mark A. Brennen, 2022. "How digital communications contribute to shaping the career paths of youth: a review study focused on farming as a career option," Agriculture and Human Values, Springer;The Agriculture, Food, & Human Values Society (AFHVS), vol. 39(4), pages 1491-1508, December.
- Mahin Ghafari & Vali Baigi & Zahra Cheraghi & Amin Doosti-Irani, 2016. "The Prevalence of Asymptomatic Bacteriuria in Iranian Pregnant Women: A Systematic Review and Meta-Analysis," PLOS ONE, Public Library of Science, vol. 11(6), pages 1-10, June.
- Elizabeth T Cafiero-Fonseca & Andrew Stawasz & Sydney T Johnson & Reiko Sato & David E Bloom, 2017. "The full benefits of adult pneumococcal vaccination: A systematic review," PLOS ONE, Public Library of Science, vol. 12(10), pages 1-23, October.
- Santos Urbina & Sofía Villatoro & Jesús Salinas, 2021. "Self-Regulated Learning and Technology-Enhanced Learning Environments in Higher Education: A Scoping Review," Sustainability, MDPI, vol. 13(13), pages 1-12, June.
- Oded Berger-Tal & Alison L Greggor & Biljana Macura & Carrie Ann Adams & Arden Blumenthal & Amos Bouskila & Ulrika Candolin & Carolina Doran & Esteban Fernández-Juricic & Kiyoko M Gotanda & Catherine , 2019. "Systematic reviews and maps as tools for applying behavioral ecology to management and policy," Behavioral Ecology, International Society for Behavioral Ecology, vol. 30(1), pages 1-8.
More about this item
Keywords
rare diseases; social economic burden; cost of illness; health technology assessment;All these keywords.
Statistics
Access and download statisticsCorrections
All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:18:y:2021:i:3:p:1101-:d:487542. See general information about how to correct material in RePEc.
If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.
If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .
If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .
Please note that corrections may take a couple of weeks to filter through the various RePEc services.