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    • Recommendations for Improving the Quality of Rare Disease Registries 

      Kodra Y; Weinbach J; Posada-de-la-Paz M; Coi A; Lemonnier SL; van Enckevort D; Roos M; Jacobsen A; Cornet R; Ahmed SF; Bros-Facer V; Popa V; Van Meel M; Renault D; von Gizycki R; Santoro M; Landais P; Torreri P; Carta C; Mascalzoni D; Gainotti S; Lopez E; Ambrosini A; Müller H; Reis R; Bianchi F; Rubinstein YR; Lochmüller H; Taruscio D (2018)
      Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They ...