The premise of Open Science is that research and medical management will progress faster if data and knowledge are openly shared. The value of Open Science is nowhere more important and appreciated than in the rare disease (RD) community. Research into RDs has been limited by insufficient patient data and resources, a paucity of trained disease experts, and lack of therapeutics, leading to long delays in diagnosis and treatment. These [...]
Author(s): Rubinstein, Yaffa R, Robinson, Peter N, Gahl, William A, Avillach, Paul, Baynam, Gareth, Cederroth, Helene, Goodwin, Rebecca M, Groft, Stephen C, Hansson, Mats G, Harris, Nomi L, Huser, Vojtech, Mascalzoni, Deborah, McMurry, Julie A, Might, Matthew, Nellaker, Christoffer, Mons, Barend, Paltoo, Dina N, Pevsner, Jonathan, Posada, Manuel, Rockett-Frase, Alison P, Roos, Marco, Rubinstein, Tamar B, Taruscio, Domenica, van Enckevort, Esther, Haendel, Melissa A
DOI: 10.1093/jamiaopen/ooaa030