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What is a registry?
| A registry is formed by enrolling people with a common characteristic--in this case, a recent diagnosis of myelodysplastic syndrome (MDS)--and collecting information about them. The data can then be used to answer questions about the participants as a group (not as individuals). A registry is different from a clinical trial, which involves evaluating treatments by assigning a narrowly-defined group of patients to different treatments in a controlled setting. In contrast, a registry is a way to observe what happens over time among patients receiving their regular care. The PRS: MDS, a disease-based registry, is providing important information about the "real world" experiences of patients with MDS. |
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Last Updated
March 9, 2009
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