The importance of rare eye disease patient registries for social science research
DOI:
https://doi.org/10.12795/araucaria.2021.i46.19Keywords:
Rare diseases of vision, retinal dystrophies, patient registration, social researchAbstract
The purpose of this article has been to show what social sciences can contribute to advance in the knowledge and understanding of personal and social problems derived from suffering from rare vision diseases. It concludes that the incorporation of data in the National Patient Registries is an opportunity to encourage research into the problems existing in our social and cultural context, in the search for solutions that will lead to improvements in treatment, health care, psycho-social care, education, employment, etc. and in the evaluation of results. In short, in the conditions and quality of life of patients and their families.
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Accepted 2020-12-17
Published 2021-03-10
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