The DM-scope registry: a rare disease innovative framework bridging the gap between research and medical care

The DM-scope registry: a rare disease innovative framework bridging the gap between research and medical care

Abstract Background The relevance of registries as a key component for developing clinical research for rare diseases (RD) and improving patient care has been acknowledged by most stakeholders. As recent studies pointed to several limitations of RD registries our challenge was (1) to improve standar...

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Bibliographic Details
Main Authors: Marie De Antonio, Céline Dogan, Ferroudja Daidj, Bruno Eymard, Jack Puymirat, Jean Mathieu, Cynthia Gagnon, Sandrine Katsahian, the Filnemus Myotonic Dystrophy Study Group, Dalil Hamroun, Guillaume Bassez
Format: Article
Language:English
Published: BMC 2019-06-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Myotonic dystrophy
Rare disease registry
Platform
Medical care
Research
Online Access:http://link.springer.com/article/10.1186/s13023-019-1088-3

Internet

http://link.springer.com/article/10.1186/s13023-019-1088-3

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