Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe.

scientific article published on 9 April 2016

Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe. is …
instance of (P31):
scholarly articleQ13442814

External links are
P356DOI10.1007/S10198-016-0787-0
P8608Fatcat IDrelease_4t7mxn4ve5aqvjz2ffdayzpqgq
P698PubMed publication ID27062257

P50authorArrigo SchieppatiQ114428691
Domenica TaruscioQ40018543
Juan Oliva-MorenoQ50795279
Imre BonczQ52984388
Renata LinertováQ58390326
P2093author name stringPedro Serrano-Aguilar
Márta Péntek
Petra Baji
Valentin Brodszky
László Gulácsi
Ulf Persson
Panos Kanavos
Georgi Iskrov
Karine Chevreul
Giovanni Fattore
BURQOL-RD Research Network
Gábor Pogány
Julio López-Bastida
Manuel Posada-de-la-Paz
Johann Matthias Graf von der Schulenburg
P2860cites workFUNCTIONAL EVALUATION: THE BARTHEL INDEXQ28201591
A systematic review of the prevalence of Morquio A syndrome: challenges for study reporting in rare diseasesQ28650616
Respiratory and sleep disorders in mucopolysaccharidosisQ30457547
Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes surveyQ33590912
Estimating the costs of informal care for people with Alzheimer's disease: methodological and practical challengesQ34239145
Improving the sensitivity of the Barthel Index for stroke rehabilitationQ34678644
Diagnosis, quality of life, and treatment of patients with Hunter syndrome in the French healthcare system: a retrospective observational studyQ35532055
Cardiac disease in patients with mucopolysaccharidosis: presentation, diagnosis and managementQ35587435
The mucopolysaccharidoses: a heterogeneous group of disorders with variable pediatric presentationsQ35764502
Economic valuation of informal care. An overview of methods and applications.Q35903595
A systematic review of the clinical effectiveness and cost-effectiveness of enzyme replacement therapies for Fabry's disease and mucopolysaccharidosis type 1.Q36490607
Overview of the mucopolysaccharidosesQ37972589
MucopolysaccharidosesQ38165092
Orphan drugs policies: a suitable case for treatmentQ38179281
Current and potential therapeutic strategies for mucopolysaccharidosesQ38194635
Socio-economic burden of rare diseases: A systematic review of cost of illness evidenceQ38347885
Assessment and diagnosis of suspected glaucoma in patients with mucopolysaccharidosisQ38358182
Modeling valuations for EuroQol health statesQ39513119
Prevalence rates of mucopolysaccharidoses in PolandQ40022382
Costs and health-related quality of life of patients with cystic fibrosis and their carers in FranceQ41528123
Cystic fibrosis -- disease burden and health-related quality of life of patients and their caregivers: results of the European BURQOL-RD survey in HungaryQ45209197
Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD studyQ45881556
[Health-related quality of life of the Hungarian population].Q53809764
Expensive drugs for rare disorders: to treat or not to treat? The case of enzyme replacement therapy for mucopolysaccharidosis VIQ64043856
[Shift of focus in the financing of Hungarian drugs. Reimbursement for orphan drugs for treating rare diseases: financing of enzyme replacement therapy in Hungary]Q64049869
Cost-of-illness methodology: a guide to current practices and proceduresQ71960493
P304page(s)89-98
P577publication date2016-04-09
P1433published inThe European Journal of Health EconomicsQ24883230
P1476titleSocial/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe
P478volume17 Suppl 1

Reverse relations

cites work (P2860)
Q93189662An online survey of burden of illness in families with mucopolysaccharidosis type II children in the United States
Q64250400An online survey on burden of illness among families with post-stem cell transplant mucopolysaccharidosis type I children in the United States
Q91735364Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data
Q92049089Assessing the impact of the five senses on quality of life in mucopolysaccharidoses
Q92139201Cost-of-illness studies in nine Central and Eastern European countries
Q91977557Healthcare Resource Utilization and the Cost of Care for Mucopolysaccharidosis I Patients in Iran
Q59806220Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review
Q47787703Social/economic costs and health-related quality of life in patients with rare diseases in Europe.
Q64904367The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys.
Q99362534Therapy development for the mucopolysaccharidoses: Updated consensus recommendations for neuropsychological endpoints

Search more.