Severe Chronic Neutropenia International Registry (SCNIR)
The Severe Chronic Neutropenia International Registry (SCNIR) was
established in 1994 to monitor the clinical course, treatment, and
disease outcomes in patients with severe chronic neutropenia (SCN). The
Registry has the largest collection of long-term data on patients with
this condition in the world.
in the Registry benefits patients, their families and the physicians,
who treat them by providing the most up to date information to them on
the natural history of SCN and its treatment options. In 2000, the
registry became a foundation with headquarters at the University of
Washington, Seattle, USA, and at the Medical School Hannover, Germany.
The European branch of the SCNIR is actively cooperating with
pediatricians and hematologists all over Europe. Since December 2001 the
activities of the European neutropenia network are being supported by a
grant of the European Commission in the program 'Rare Diseases'. Thanks
to the funding of the EU Commission, an internet-accessible database
system was acquired that enables all centers participating in the SCNIR
to get most pertinent information on severe chronic neutropenia directly
The SCNIR collects both, general and specific clinical information, e.g.
on malignant transformation, bone marrow transplantation and outcome
etc., on patients with severe chronic neutropenia. All information
arising from the database of the European Branch of the Severe Chronic
Neutropenia International Registry is disseminated among the members of
this network in order to provide an update of the professional skills of
the European network partners, which in turn is passed on to other
physicians in the participating countries. Annual meetings are held to
update all partners on the most current developments and discuss
relevant issues on this rare disease with experienced colleagues from
Supplementing the database on SCN, physicians provide biological
material like blood or bone marrow samples and smears to the cell bank
of the SCNIR that may be used for specific relevant research projects on
severe chronic neutropenia.