Population Preferences for Rare Diseases in Spain
نویسندگان
چکیده
منابع مشابه
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR)
National rare diseases registry in Spain: pilot study of the Spanish Rare Diseases Registries Research Network (SpainRDR) Verónica Alonso, Ignacio Abaitua, Óscar Zurriaga, Jenaro Astray, Manuel Errezola, Josefa M Aldana-Espinal, Mario J Margolles, Josep Jiménez, Joaquín A Palomar, Milagrosa Santana, Enrique Ramalle-Gomarra, Julián M Ramos, Federico E Arribas, Rufino Álamo, Gonzalo Gutiérrez-Ávi...
متن کاملPatients’ and rheumatologists’ preferences for the attributes of biological agents used in the treatment of rheumatic diseases in Spain
PURPOSE To define importance values assigned to attributes of biological agents (BAs) by Spanish patients with rheumatic diseases (rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis) and rheumatologists. PATIENTS AND METHODS This was an observational, cross-sectional design based upon a rank-based full-profile conjoint analysis. A literature review and four focus groups wer...
متن کاملPopulation genetics of rare variants and complex diseases.
OBJECTIVES Identifying drivers of complex traits from the noisy signals of genetic variation obtained from high-throughput genome sequencing technologies is a central challenge faced by human geneticists today. We hypothesize that the variants involved in complex diseases are likely to exhibit non-neutral evolutionary signatures. Uncovering the evolutionary history of all variants is therefore ...
متن کاملEpigenetics in Rare Diseases
By definition, a rare disease is any condition that affects a small percentage of the population. However, the cutoff number for which a disease is considered as rare varies with different regions. In the United States, the cutoff was fewer than 200,000 people [1] and while in Japan, it was fewer than 50,000 [2]. For Europe, rare diseases are life-threatening or chronically debilitating ones in...
متن کامل[Rare diseases in paediatrics].
Few areas of paediatric care are as susceptible to the revision of lines of action, and require such professional training, as the care of the child with a rare disease (RD) and his/her family, especially if there are malformations. The lifelong impact, which many RDs entail, make continuous monitoring of the child compulsory, centred both on the evolutionary aspects of the RD and on the family...
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ژورنال
عنوان ژورنال: Value in Health
سال: 2016
ISSN: 1098-3015
DOI: 10.1016/j.jval.2016.09.1424