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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Pathogenic variants associated with congenital neutropenia

Genetic testing of severe congenital neutropenia is coordinated by laboratory of SCNIR which is led by Prof. Dr. Julia Skokowa and performed by the Institute of Human Genetics, University Hospital of Tübingen led by Prof. Olaf Rieß. We provide single gene, neutropenia gene panel, whole exome or whole genome analyses by means of Next Generation Sequencing.  

Molecular genetic analysis of somatic leukemia gene panel

For the routine screening of secondary leukemia in patients with congenital neutropenia or patients undergoing long-term G-CSF treatment, analysis for acquired MDS-associated mutations is coordinated by the laboratory...

Basic research on molecular and genetic causes underlying severe chronic neutropenia as well as the development of new therapy strategies are performed in the Division of Translational Oncology led by Prof. Dr. Julia Skokowa which belongs to the Department II for Oncology, Hematology and Clinical Immunology (University Hospital of Tübingen) led by Prof. Dr.Karl Welte.

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  • Clinical contact
  • Laboratory
  • Data Management
  • Scientific assistant

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