Resumo

QUIRLAND-LAZO, Camila et al. Healthcare Models for Rare Diseases: A Systematic Review of the Literature. Rev. Gerenc. Polit. Salud [online]. 2018, vol.17, n.34, pp.112-118. ISSN 1657-7027.  https://doi.org/10.11144/javeriana.rgps17-34.mase.

Low prevalence diseases require management models different from those used in other conditions. This work was intended to gather international experiences on this issue. Searches were made in many indexed literature databases as well as in those with gray literature. A panel of experts from different disciplines checked the abstracts and their potential adaptation into the Colombian context. The initial search retrieved 5604 references and the manual search added other 31 references. At the end, 78 articles provided useful information for the analysis. The results allow to state that a management model consists of several components, to wit: policies, legislation and administrative aspects; definition and coding of the diseases; research and education; specialized centers; excellence centers and service networks; diagnosis, screening, prevention, and promotion; orphan drug inclusion; rehabilitation and palliative care; organizations of patients and support groups or networks; and social-sanitary support (labor and educational inclusion).

Palavras-chave : rare diseases; drugs in the pharmaceutical service specialized component; organization and administration; patient service management.

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