The Severe Chronic Neutropenia International Registry is now located in Boston, MA.
To contact the Registry please email SCNIR-dl@childrens.harvard.edu or call 617-919-1574.
The Registry’s website is: General | SCNIR Site (https://www.scnir.org).
Severe Chronic Neutropenia International Registry
The Severe Chronic Neutropenia International Registry (SCNIR or Registry) is a global organization dedicated to finding the causes, consequences and best treatments for severe chronic neutropenia (SCN). The SCNIR opened in 1994 after researchers discovered that the hematopoietic growth factor called granulocyte colony stimulating factor (G-CSF) is an effective treatment for SCN.
Neutropenia is characterized by a reduced number of neutrophils in the blood. Neutrophils are critical cells in our body for responding to bacterial and fungal infections. Severe neutropenia means that the neutrophils are less than 500 per cubic millimeter, i.e., less than 0.5 x 109/L. Chronic neutropenia means that the severe neutropenia lasts or recurs repeatedly over weeks or months or even a lifetime.
The Registry is a voluntary organization supported primarily by government grants and private gifts. Patients may participate if they give informed consent under regulations of the University of Washington, Seattle, Washington; Hannover Medical School, Hannover Germany and other cooperating universities and hospitals. Participation benefits patients, their families and their physicians by providing up-to-date information about SCN and its treatment options. Over its 25-year history, the Registry has become a valued resource on the natural history, genetic and molecular basis and best available treatments for SCN. The Registry’s database is the world’s largest resource for this information. The SCNIR Advisory Board and other expert hematologists familiar with the diagnosis and management of SCN also provide advice to individual patients and physicians.