Driving interest in consolidating resources for the creation of a global rare disease patient registry.

摘要

Historically, much attention has been paid to patients with chronic disease, cancer, and other more common diseases. The Office of Rare Diseases Research at the National Institutes of Health (ORDR) proposes to establish a landmark, global, rare diseases registry to serve the patients that make up under-served and many times life-threatening category. In this issue, we are honored and excited to publish the proceedings of the well-organized and executed workshop, sponsored by the N1H, in January of this year. The workshop comprised significant experts and leaders in this area of research whose ideas, organization, and innovation are discussed in this article. A registry of all rare disease is a lofty and needed goal, which we support and are grateful to share with our readers in this issue.