Purpose of review Registries
provide ‘real world’ perspectives on the natural history and outcomes for many clinical conditions. The purpose of this review is to identify registries
for nonmalignant hematological disease and to describe the operation of a successful long-term registry for patients with severe chronic neutropenia
There was an upswing in registries
about 20 years ago, based on optimism about their utility to improve patient care. To show value, registries
must define outcomes for populations of patients with specific medical conditions and the effects of treatment. This is challenging for many reasons. The Severe Chronic Neutropenia
International Registry is an example of a successful registry. This report describes underlying reasons for its success.
are important to organize and analyze clinical information across geographic, ethnic and social boundaries. They are also challenging to organize, administer and support.