The Minimum Data Set for Rare Diseases: Systematic Review

Filipe Andrade Bernardi   ^{1, 2 *} , BSc, MSc ;   Bibiana Mello de Oliveira   ^{2, 3, 4 *} , MSc, MD ;   Diego Bettiol Yamada   ^{1, 2 *} , PhD ;   Milena Artifon   ^{2, 3} , MSc ;   Amanda Maria Schmidt   ^{2, 3} , BSc ;   Victória Machado Scheibe   ^{2, 3, 5} , BSc ;   Domingos Alves   ^{1, 2 *} , PhD, Prof Dr ;   Têmis Maria Félix   ^{2, 3 *} , MD, PhD

¹ Health Intelligence Laboratory, Ribeirao Preto Medical School, University of Sao Paulo, Ribeirão Preto, Brazil

² Brazilian Rare Disease Network, Porto Alegre, Brazil

³ Medical Genetics Service, Hospital de Clinicas de Porto Alegre, Porto Alegre, Brazil

⁴ Federal University of Rio Grande do Sul, Porto Alegre, Brazil

⁵ Faculty of Medicine, Lutheran University of Brazil, Canoas, Brazil

*these authors contributed equally