About the SCNIR

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.

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The Registry is a voluntary organization supported primarily by government grants and private gifts. The registry does not require participants to donate samples or have any additional procedures. Patients may participate if they give informed consent under regulations of Boston Children's Hospital 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 one of the world’s largest resources 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.

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SCNIR specialists are available for consultation.