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Short information

Diseases that predispose to hemophagocytic lympho- histiocytosis (HLH) are rare diseases, that are difficult to diagnose and to treat. In order to improve diagnosis and treatment for these diseases, more knowledge about their biology, the potential triggers of HLH and about factors that can influence the success of treatment are required. A European consortium of clinicians and scientists from Germany, France, Italy, Great Britain and Scandinavia has been founded to address some of these questions. In particular, the following questions will be addressed:

  1. Which mechanisms are impaired in cells of patients who develop HLH or who are at risk to develop HLH?
  2. Which cytokines (inflammatory substances in the blood) play a role in HLH?

  • Print out documents for HLH-diagnostic and –registry inclusion (see below) and fill in
  • Please send together with patient blood samples (2-3 ml serum plus 10 -15 ml EDTA blood; for infants and young children smaller volumes are acceptable) plus ca. 10 patient hairs plus 10 -15 ml EDTA blood of a healthy control to Medical Center - University of Freiburg – CCI Advanced Diagnostic Unit at ZTZ, Breisacher Str. 115, EG, 79106 Freiburg, Germany. For patients with German health insurance: please include transfer form (Überweisungsschein)
  • Please send together with patient samples the signed parent/patient consent.
  • Please announce shipment in advance (via email or phone, see Contact)

Documents for HLH-diagnostic and -registry inclusion (deutsch, PDF)


  1. Ablaufschema
  2. Information für den aufklärenden Arzt
  3. Patienteninformation und -einwilligung Register/GenDG/Forschungsprojekt
  4. Einwilligungserklärung DKKR
  5. Meldefax HLH-Register
  6. Meldefax HLH-Observational Patients
  7. Anforderungsschein „HLH-Diagnostik“
  8. Erstmeldung DKKR

Cooperation & Funding

The Medical Center - University of Freiburg - Center for Chronic Immonodeficiency (CCI) is member of the European Reference Network for Primary Immonodeficiencies, Autoinflammatory Disorders, Autoimmune Diseases, Paediatric Rheumatic Diseases (ERN RITA). In this context it cooperates with other members from different states in carrying out this study.

Further cooperation and funding partners

German Study Coordination

PD Dr. Kai Lehmberg

Tel. +49 (0) 40 7410 - 52580

Fax +49 (0) 40 7410 - 58250


German Immunological Study Coordination

Prof. Dr. med. Stephan Ehl

Tel. +49 (0) 761 270-77 300

Fax +49 (0) 761 270-77 744


Advanced Diagnostics Unit

Miriam Groß

Tel. +49 (0) 761 270 71 010

Fax +49 (0) 761 270 96 71 070


Address for blood shipment (German immunological Lab)

Universitätsklinikum Freiburg
CCI Advanced Diagnostic Unit im ZTZ
Breisacher Str. 115, EG
79106 Freiburg