Dear neutropenia patients,

due to the current  COVID-19 pandemic and the disturbing news in the media, many questions from our patients regarding particular risks for a severe course of the disease due to the pre-existing neutropenia reach us.

Unfortunately, there is no reliable data available yet. We know from the numerous other viral diseases that patients with isolated neutropenia have no increased risk of contracting a viral infection, because the virus defense function is normal.

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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. Participation 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 the most pertinent information on severe chronic neutropenia directly via the Internet.

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 other countries.

Supplementing the database on SCN, physicians provide biological material like blood or bone marrow samples and smear to the cell bank of the SCNIR that may be used for specific relevant research projects on severe chronic neutropenia.

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Data Protection

The SCNIR manages patient data in accordance with the applicable data protection regulations, in particular the General Data Protection Regulation (GDPR) of 25 May 2018.

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Genetic testing of severe congenital neutropenia is performed at the University Hospital Tübingen (Germany), in the lab of the SCNIR which is lead by Prof. Dr. Julia Skokowa. Genetic testings are analysed in cooperation with the Institute for Human Genetics lead by Prof. Dr. Olaf Rieß at University Hospital Tübingen. In Tübingen we provide single gene, whole exome or whole genome analyses.  

For the routine screening for secondary leukemias in patients with congenital neutropenia or patients with long-term G-CSF treatment, analyses for aquired mutations in the gene of the G-CSF receptor (CSF3R) are performed in the lab of the SCNIR lead by Prof. Dr. Julia Skokowa.

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Basic research and diagnostics on severe chronic neutropenia are performed in the Department of Molecular Hematopoiesis. A special focus is the study of molecular causes of the subgroups of congenital neutropenia.

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  • Clinical contact
  • Data Management
  • Scientific assistant

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