Mapping, Infrastructure, and Data Analysis for the Brazilian Network of Rare Diseases: Protocol for the RARASnet Observational Cohort Study

Journals

1. Horgan D, Hamdi Y, Lal J, Nyawira T, Meyer S, Kondji D, Francisco N, De Guzman R, Paul A, Nallamalla K, Park W, Triapthi V, Tripathi R, Johns A, Singh M, Phipps M, Dube F, Abu Rasheed H, Kozaric M, Pinto J, Stefani S, Aponte Rueda M, Alarcon R, Barrera-Saldana H. Empowering quality data – the Gordian knot of bringing real innovation into healthcare system. Diagnosis 2023;10(2):140 View
2. Bernardi F, Yamada D, de Oliveira B, Lima V, Félix T, Alves D. The minimum dataset for rare diseases in Brazil: a systematic review protocol. Procedia Computer Science 2022;196:439 View
3. Félix T, de Oliveira B, Artifon M, Carvalho I, Bernardi F, Schwartz I, Saute J, Ferraz V, Acosta A, Sorte N, Alves D, Amorim T, Adjuto G, Almeida R, Brandão F, Bueno L, de Andrade M, Cagliari C, Cardoso M, Carvalho E, Costa M, El-Husny A, Faccini L, Fock R, Florêncio R, Galera M, Giugliani R, de Rosso Giuliani L, Grumach A, Horovitz D, Llerena-Junior J, Kim C, Maia R, Martins A, de Medeiros P, de Castro Musolino N, Nita M, da Silva Nunesmaia H, de Oliveira J, Paiva W, Pimentel H, de Camargo Pinto L, Prazeres V, de Freitas Rodrigues Ribeiro B, Ribeiro E, Rodrigues M, Salles M, Sanseverino M, dos Santos E, Santos M, Sarti F, da Silva L, da Silva R, Steiner C, Tavares A, Teixeira T, Vergara A, Zen P, Zuchetti M. Epidemiology of rare diseases in Brazil: protocol of the Brazilian Rare Diseases Network (RARAS-BRDN). Orphanet Journal of Rare Diseases 2022;17(1) View
4. Neiva M, Vinci A, Yamada D, Bernadi F, Soares G, Lima V, Alves D, Félix T. Informed Consent Form Automated Validation, The Brazilian Rare Disease Network Case Proposal. Procedia Computer Science 2023;219:1538 View
5. Bernardi F, Alves D, Neiva M, Yamada D, Lima V, Vinci A, Thomazini G, Rijo R, Felix T. A proposal for a set of attributes relevant for Web portal data quality: The Brazilian Rare Disease Network case. Procedia Computer Science 2023;219:1316 View
6. Bernardi F, Mello de Oliveira B, Bettiol Yamada D, Artifon M, Schmidt A, Machado Scheibe V, Alves D, Félix T. The Minimum Data Set for Rare Diseases: Systematic Review. Journal of Medical Internet Research 2023;25:e44641 View
7. de Oliveira B, Neiva M, Carvalho I, Schwartz I, Alves D, Felix T. Availability of Genetic Tests in Public Health Services in Brazil: Data from the Brazilian Rare Diseases Network. Public Health Genomics 2023:145 View
8. Gerk A, Kundu S, Meara J, Stegmann J. Digital solutions for rare diseases in global health. The Lancet Global Health 2024;12(7):e1091 View
9. Neiva M, de Oliveira B, Schmidt A, Scheibe V, Milke J, dos Santos M, Yamada D, Colombo Filho M, Soares G, de Araújo Ribeiro Y, Bruno O, Félix T, Alves D, RARAS Network group . ICD-10 - ORPHA: An Interactive Complex Network Model for Brazilian Rare Diseases. Procedia Computer Science 2024;239:634 View
10. de Oliveira B, Bernardi F, Baiochi J, Neiva M, Artifon M, Vergara A, Martins A, Grumach A, Acosta A, Husny A, de Freitas Rodrigues Ribeiro B, Ramos C, Steiner C, Kim C, Christofolini D, Yamada D, Carvalho E, Ribeiro E, de Arruda Bastos F, Serpa F, Brandão F, Adjuto G, Carvalho I, Saute J, Junior J, Bueno L, da Silva L, Santos M, Costa M, Giusti M, Galera M, Filho M, de Andrade M, De Oliveira Cardoso M, de Menezes Ferreira M, Zeny M, Caldato M, Sorte N, Musolino N, de Medeiros P, Zen P, Da Silva R, Maia R, Fock R, Almeida R, Valle S, Amorim T, Teixeira T, Prazeres V, de Faria Ferraz V, Lima V, Paiva W, Schwartz I, Alves D, Félix T, de Sousa Melo A, da Silva Rocha A, Aragão A, Braccini A, Schmidt A, dos Santos A, de Souza e Silva A, Lima A, Scasso A, Oliveira A, Perico A, da Silva Aniceto B, Pinheiro B, Badaró B, Braga B, de Oliveira Chapiesk B, Pinheiro B, Pereira B, de Souza Ponce B, Martins B, de Eça B, de Souza B, Paschoalino B, Valadares B, de Oliveira C, Sales C, Alexandre C, Girelli C, Balluz C, de Paiva Farias C, Vilemar C, Arrigoni C, de Almeida Passos C, Harumi C, Barbieri C, Prado D, Monteiro D, da Silva Cruz D, Batista E, Naves E, da Silva E, Teixeira E, Amaral F, Moreira F, de Souza F, Boggian F, Filho F, Lôla G, Pereira G, Diehl G, Cordeiro G, Duran G, Fonseca G, Mello H, Serpa H, Veiga H, Gabriel I, Formenti I, de Brito Ramos I, Paiva I, Ferreira J, Rangel J, Florêncio J, Filho J, Dantas J, Milke J, Rios J, Pavao J, Angelo K, de Oliveira K, de Carvalho K, Zulszeski K, de Lima L, Nascimento L, dos Santos Pereira L, Makariewicz L, Bittencourt L, Medeiros L, Vasconcelos L, Jannuzzi L, da Silva L, Aguilar L, Chibicheski L, de Oliveira Simões L, Dias M, dos Santos M, Neves M, Henriques M, Leal M, Tacla M, Souza M, da Paz M, Silva M, Soares N, da Silva Gilbert N, Silva O, Sousa P, Rocha P, Jacob R, da Silva R, Carvalho R, Santos R, Silva R, Holanda R, Mourão R, de Oliveira R, Braga R, Macely S, Morais S, Mucumbi S, Nhime S, de Sousa S, Rego T, Gurjão T, dos Santos Gomes T, Gazineu T, Machado V, Muniz V, Rocha V, Leão V, Oliveira W, Miguel W, de Araújo Ribeiro Y, dos Santos Y. Epidemiological characterization of rare diseases in Brazil: A retrospective study of the Brazilian Rare Diseases Network. Orphanet Journal of Rare Diseases 2024;19(1) View

Books/Policy Documents

1. Yamada D, Bernardi F, Filho M, Neiva M, Lima V, Vinci A, de Oliveira B, Félix T, Alves D. Computational Science – ICCS 2022. View
2. Cassão V, Bernardi F, Lima V, Soares G, Miyoshi N, de Andrade Mioto A, Kritski A, Alves D. Computational Science – ICCS 2023. View
3. Andrade Martins P, Colombo Filho M, de Andrade Mioto A, Bernardi F, Lima V, Félix T, Alves D. Computational Science – ICCS 2023. View