Discapacidad
Con motivo de la presentación en el parlamento británico del borrador de Ley sobre documentos de identidad, que incluye disposiciones relativas a la recogida de datos biométricos, el Dr. John Gill, científico Jefe del Royal National Institute for the Blind (RNIB) analiza en este artículo las aplicaciones de este nuevo método de verificación de la […]
…Objetivo. La encefalitis letárgica se extendió como una pandemia en los años 1918-1921. Clínicamente presentaba un gran polimorfismo y la presentación clínica variaba en sucesivos brotes epidémicos y en diferentes regiones. La epidemia de encefalitis letárgica en España se ha estudiado poco. Para conocer sus características clínicas y evolutivas, hemos revisado los casos comunicados en […]
…The British Paediatric Surveillance Unit (BPSU), a joint undertaking between the Royal College of Paediatrics and Child Health, Institute of Child Health and Health Protection Agency, undertakes nationwide surveillance of rare paediatric disorders. In 2007-09, formal evaluation to examine its effectiveness commenced.Centres of Disease Control guidelines for appraising public health surveillance systems were applied. Data […]
…Rare diseases are a clinically heterogeneous group of about 6.500 disorders, and in fewer than 200.000 individuals in the USA.They are commonly diagnosed during childhood, often inherited, and can have deleterious long-term effects. Although any one condition is rare, their cumulative public health burden is substantial, with 6-8% of people having a rare disease at […]
…Rare disease registries are a priority at European level and specific actions are being implemented by the European Commission to support their development.In Italy, a National Registry of rare diseases has been established in 2001 as a network of regional registries. The latter have gradually been established and the full coverage of the Italian territory […]
…Clinical trials to evaluate patients affected by rare diseases are often hampered by the difficulty of recruiting a critical sample size. Registries for rare conditions are thus extremely powerful tools for overcoming recruitment problems. Here we present and discuss the international experience with alpha1-antitrypsin deficiency achieved by the Alpha One International Registry, and national experience […]
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