The current situation and needs of rare disease registries in Europe.

@article{Taruscio2013TheCS,
  title={The current situation and needs of rare disease registries in Europe.},
  author={Domenica Taruscio and Sabina Gainotti and Emanuela Mollo and Luciano Vittozzi and Fabrizio Bianchi and Monica Ensini and Manuel Posada},
  journal={Public health genomics},
  year={2013},
  volume={16 6},
  pages={288-98}
}
BACKGROUND Registries are considered key instruments for developing rare disease (RD) clinical research, enhancing patient care and health planning, and improving social, economic and quality-of-life outcomes. Indeed, it is usually the case that no single institution, and in many cases no single country, has sufficient data to provide results that can be applied broadly to clinical and translational research. However, the fragmentation and heterogeneity of the registries, which are often the… CONTINUE READING
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