{"data":{"id":"10.6084/m9.figshare.5696053.v1","type":"dois","attributes":{"doi":"10.6084/m9.figshare.5696053.v1","prefix":"10.6084","suffix":"m9.figshare.5696053.v1","identifiers":[],"alternateIdentifiers":[],"creators":[{"name":"Melo, Débora Gusmão","nameType":"Personal","givenName":"Débora Gusmão","familyName":"Melo","affiliation":[],"nameIdentifiers":[]},{"name":"Germano, Carla Maria Ramos","nameType":"Personal","givenName":"Carla Maria Ramos","familyName":"Germano","affiliation":[],"nameIdentifiers":[]},{"name":"Porciúncula, Carlos Guilherme Gaelzer","nameType":"Personal","givenName":"Carlos Guilherme Gaelzer","familyName":"Porciúncula","affiliation":[],"nameIdentifiers":[]},{"name":"Paiva, Isaias Soares De","nameType":"Personal","givenName":"Isaias Soares De","familyName":"Paiva","affiliation":[],"nameIdentifiers":[]},{"name":"Neri, João Ivanildo Da Costa Ferreira","nameType":"Personal","givenName":"João Ivanildo Da Costa Ferreira","familyName":"Neri","affiliation":[],"nameIdentifiers":[]},{"name":"Lucimar Retto Da Silva De Avó","affiliation":[],"nameIdentifiers":[]},{"name":"Demarzo, Marcelo Marcos Piva","nameType":"Personal","givenName":"Marcelo Marcos Piva","familyName":"Demarzo","affiliation":[],"nameIdentifiers":[]},{"name":"Galera, Marcial Francis","nameType":"Personal","givenName":"Marcial Francis","familyName":"Galera","affiliation":[],"nameIdentifiers":[]}],"titles":[{"title":"Qualification and provision of physicians in the context of the National Policy on Comprehensive Care of People with Rare Diseases in the Brazilian National Health System (SUS)"}],"publisher":"SciELO journals","container":{},"publicationYear":2017,"subjects":[{"subject":"111705 Environmental and Occupational Health and Safety","subjectScheme":"FOR"},{"subject":"FOS: Health sciences","schemeUri":"http://www.oecd.org/science/inno/38235147.pdf","subjectScheme":"Fields of Science and Technology (FOS)"},{"subject":"FOS: Health sciences","subjectScheme":"Fields of Science and Technology (FOS)"},{"subject":"160506 Education Policy","subjectScheme":"FOR"},{"subject":"FOS: Political science","schemeUri":"http://www.oecd.org/science/inno/38235147.pdf","subjectScheme":"Fields of Science and Technology (FOS)"},{"subject":"FOS: Political science","subjectScheme":"Fields of Science and Technology (FOS)"}],"contributors":[],"dates":[{"date":"2017-12-13","dateType":"Created"},{"date":"2017-12-13","dateType":"Updated"},{"date":"2017","dateType":"Issued"}],"language":null,"types":{"ris":"DATA","bibtex":"misc","citeproc":"dataset","schemaOrg":"Dataset","resourceType":"Dataset","resourceTypeGeneral":"Dataset"},"relatedIdentifiers":[{"relationType":"IsSupplementTo","relatedIdentifier":"10.1590/1807-57622016.0211","relatedIdentifierType":"DOI"},{"relationType":"IsIdenticalTo","relatedIdentifier":"10.6084/m9.figshare.5696053","relatedIdentifierType":"DOI"}],"relatedItems":[],"sizes":["130689 Bytes"],"formats":[],"version":null,"rightsList":[{"rights":"Creative Commons Attribution 4.0 International","rightsUri":"https://creativecommons.org/licenses/by/4.0/legalcode","schemeUri":"https://spdx.org/licenses/","rightsIdentifier":"cc-by-4.0","rightsIdentifierScheme":"SPDX"}],"descriptions":[{"description":"This theoretical essay reflects on the qualification and provision of physicians in the context of the National Policy on Comprehensive Care of People with Rare Diseases in the SUS. To carry out this analysis, we introduce the Policy and its guidelines, with a focus on discussion of two integrated strategies: the provision and settlement of geneticist physicians; and training of primary care professionals with regard to genetic diseases and congenital defects. Finally, in view of the Brazilian National Curriculum Guidelines for undergraduate medical courses, we suggest a profile of minimum competencies required in Genetics, developed in order to provide resources to undergraduate courses in Health, in particular, medical courses. We provide a theoretical reference to support the outline of programs of education and training in Health, contributing to including Genetics in the SUS.","descriptionType":"Abstract"}],"geoLocations":[],"fundingReferences":[],"xml":"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","url":"https://scielo.figshare.com/articles/Qualification_and_provision_of_physicians_in_the_context_of_the_National_Policy_on_Comprehensive_Care_of_People_with_Rare_Diseases_in_the_Brazilian_National_Health_System_SUS_/5696053/1","contentUrl":null,"metadataVersion":2,"schemaVersi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