Rare Disease Research and Integrated Systems: 1+1=3

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Rare Disease Research and Integrated Systems: 1+1=3 Rare disease data can be hard to come by…Really hard when there are fewer subjects to study compared to those in the general population. By their very nature, these data involve the need to be collected from more […]

Rare Disease Registries 101

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Disease Registries 101…is that when two diseases get married and pick out house wares? The term registry conjures different meanings to different groups. Couples use a registry when marrying. Hotels have registries of guests. And so do hospitals. There are also donor and recipient registries […]