Orphanet Journal of Rare Diseases

The following new articles have just been published in Orphanet Journal of Rare Diseases

RESEARCH

Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease

Libby Wood, Guillaume Bassez, Corinne Bleyenheuft, Craig Campbell, Louise Cossette, Aura Cecilia Jimenez-Moreno, Yi Dai, Hugh Dawkins, Jorge Alberto Diaz Manera, Celine Dogan, Rasha el Sherif, Barbara Fossati, Caroline Graham, James Hilbert, Kristinia Kastreva, En Kimura…

Orphanet Journal of Rare Diseases 2018, 13:155 | Published on: 5 September 2018

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RESEARCH

Rare disease registries: potential applications towards impact on development of new drug treatments

Marijke C. Jansen-van der Weide, Charlotte M. W. Gaasterland, Kit C. B. Roes, Caridad Pontes, Roser Vives, Arantxa Sancho, Stavros Nikolakopoulos, Eric Vermeulen and Johanna H. van der Lee

Orphanet Journal of Rare Diseases 2018, 13:154 | Published on: 5 September 2018

Full Text | PDF

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