Key learnings Chile can adopt to create and implement a national registry of rare diseases?

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dc.catalogadorpva
dc.contributor.advisorValdivia Cabrera, Gonzalo
dc.contributor.authorVijayran, Hemant
dc.contributor.otherPontificia Universidad Católica de Chile. Escuela de Medicina
dc.date2023-04-02
dc.date.accessioned2022-09-06T21:13:59Z
dc.date.issued2022
dc.date.updated2022-09-05T19:02:08Z
dc.descriptionTesis (Master of Public Health)--Pontificia Universidad Católica de Chile, 2022
dc.description.abstractThere are 7000 identified rare diseases (RD) globally, and the definition of each RD varies from country to country. RD are often chronic, progressive, and frequently life-threatening. It is estimated that almost 400 million people are living with one of the 7000 identified RD globally, taking in account their families, the actual number of people that are affected directly or indirectly with RD is very high, hence declaring RD a public health problem. In Chile, it is estimated that 1 (one) million people are living with one of the RD. As little is known about these diseases in Chile, often RD remain underdiagnosed due to lack of epidemiological and real-world evidence data. To understand Chilean epidemiological situation and to better manage this neglected public health problem, it is crucial to have the national registry of RD first to understand epidemiological & socio demographic situation then to provide the integrated approach to include RD in the national health care plan, to further strengthen framework of RD and with overall objective to be able to improve the life of patients, caregivers & their families. Using a combination of literature surveys, the author evaluated Chile’s rare disease landscape and made some recommendations to the key learnings Chile can adopt to create and implement a national registry of RD. The literature review includes the latest revision of available literature in Colombia and France; countries that have managed to develop the successful national RD registry. Keywords: Rare Diseases, National Registry Chile, Literature review, Recommendations
dc.description.version2023-04-02
dc.fechaingreso.objetodigital2022-09-05
dc.format.extent28 páginas sin numerar
dc.fuente.origenAutoarchivo
dc.identifier.doi10.7764/tesisUC/MED/64726
dc.identifier.urihttps://doi.org/10.7764/tesisUC/MED/64726
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/64726
dc.information.autorucEscuela de Medicina ; Valdivia Cabrera, Gonzalo ; 0000-0001-7280-0283 ; 57007
dc.information.autorucEscuela de Medicina ; Vijayran, Hemant ; S/I ; 1183086
dc.language.isoen
dc.nota.accesoContenido completo
dc.rightsacceso abierto
dc.subjectRare diseaseses_ES
dc.subjectNational registry Chilees_ES
dc.subjectLiterature reviewes_ES
dc.subjectRecommendationses_ES
dc.subject.ddc610
dc.subject.deweyMedicina y saludes_ES
dc.subject.ods03 Good health and well-being
dc.subject.ods16 Peace and Justice Strong Institutions
dc.subject.odspa03 Salud y bienestar
dc.subject.odspa16 Paz, justicia e instituciones sólidas
dc.subject.otherEnfermedades rarases_ES
dc.titleKey learnings Chile can adopt to create and implement a national registry of rare diseases?es_ES
dc.typetesis de maestría
sipa.codpersvinculados57007
sipa.codpersvinculados1183086
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