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Medicina Clínica 02/2013; · 1.38 Impact Factor
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ABSTRACT: In recent years, there has been a growing interest in the development of biological samples and biobanks that make it easier for investigators to have access to quality samples and their associated clinical and epidemiological data. Thus, biobanks have become indispensible technological platforms for the development of both basic and clinical research. The properties of the biological sample as a support medium of personal and family information require that they are treated in accordance with new ethical standards. For this reason, the Law on Biomedical Research, provides a new regulatory framework in the process of obtaining samples and their storage for research purposes, where the consent of the source subject, data protection, the favourable opinion of a Research Ethics Committee, the prior taking out of an insurance policy against possible adverse effects, and the quality and safety requirements in the handling and management of these materials are key elements.
Cirugía Española 01/2011; 89(4):207-12. · 0.87 Impact Factor
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ABSTRACT: Autism Spectrum Disorders (ASD) are lifelong neurodevelopmental disabilities. Burden of Disease is an indicator that provides important information on health status and outcomes such as premature mortality and disability. In order to estimate the burden of disease of ASD in the Spanish population during 2003, we followed the procedures used in the WHO Global Burden of Disease Study. ASD generated 43,928 Disability Adjusted Life Years (DALY) in Spain in 2003, from which 33,797 were attributable to Autistic Disorder and 10,131 were caused by Asperger's Disorder and Pervasive Developmental Disorder-Not Otherwise Specified. DALY could be a useful tool for health policy makers for setting health service priorities, allocating available resources effectively and providing a comparable measure of output for early intervention.
Journal of Autism and Developmental Disorders 03/2008; 38(2):288-96. · 3.34 Impact Factor
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ABSTRACT: Scleroderma (systemic sclerosis) is a rare disease that results in great suffering. We estimated the burden of disease posed by scleroderma and its relative importance in the health of the Spanish population.
We estimated scleroderma-based burden of disease following procedures developed for the Global Burden of Disease study to ensure comparability.
Despite its low prevalence, scleroderma generated 1732 disability-adjusted life-years (DALY) in Spain in 2001, comprising 562 (32%) years of life lost and 1170 (68%) years lived with disability. Most scleroderma-related DALY (73%) occurred in the population aged 15-54 years. Estimated DALY accounted for 0.59% of other musculoskeletal disorder-related DALY in the European A subregion (countries with low mortality rate in both adults and children in the World Health Organization classification), a significant value in the overall burden of disease.
The burden of scleroderma in Spain was high, with disability being the major contributing factor. Burden of disease is an important measure in rare diseases, and may be an important indicator to be considered as a health unit in developed countries.
The Journal of Rheumatology 12/2007; 34(11):2236-42. · 3.69 Impact Factor
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ABSTRACT: In 1981, a progressive multi-systemic disease called Toxic Oil Syndrome (TOS) appeared in Spain as an epidemic that affected 20,000 people. The International Classification of Impairments, Disabilities and Handicaps (ICIDH) was chosen to characterize the health status of patients more severely affected by TOS.
A random sample of 292 with permanent disability was selected. Disability was assessed with a questionnaire based on ICIDH and the Stanford Health Assessment Questionnaire. Handicap was measured using London Handicap Scale. Distributions of the proportions and 95% confidence intervals for disabilities, handicaps were calculated and stratified by dimensions, age and sex. The chi2 test was used for inter-group comparisons.
Two hundred and fourteen patients were interviewed. Mobility-related and behaviour disabilities were most prevalent. Disability rose with age and was higher among women, except for behaviour disabilities which were more frequent in young men. Mean handicap score was 78.0 +/- 12.7. Handicap dimensions most affected were physical independence and economic self-sufficiency.
The health profile of the population hardest hit by TOS is characterized by the presence of important functional and psychosocial disabilities that limit performance of daily living activities and social role, and are in accord with the handicap that such persons suffer.
Disability and Rehabilitation 11/2003; 25(20):1158-67. · 1.50 Impact Factor
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ABSTRACT: Enfermedad rara es aquella cuya prevalencia es inferior a 5 casos por cada 10.000 personas en la Comunidad Europea. La mayoría de los casos aparecen en la edad pediátrica, dada la alta frecuencia de enfermedades de origen genético y de anomalías congénitas. No obstante, la prevalencia es mayor en los adultos que en los niños, debido a la excesiva mortalidad de algunas enfermedades infantiles graves y a la influencia de ciertas enfermedades que aparecen a edades más tardías. La Red Epidemiológica de Investigación en Enfermedades Raras (REpIER) desarrolló el primer atlas de distribución geográfica de las enfermedades raras en España, evaluó la existencia de registros de enfermedades raras existentes, facilitó el ulterior desarrollo de planes autonómicos y acciones sociosanitarias y planteó un marco de necesidades a desarrollar, que más tarde han llegado a ser reconocidos como necesidades a resolver en el marco del Comunicado de la Comisión Europea sobre Enfermedades Raras y en la propia Ponencia del Senado.
Anales del sistema sanitario de Navarra, ISSN 1137-6627, Vol. 31, Nº. 2, 2008 (Ejemplar dedicado a: Enfermedades raras), pags. 9-20.
