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Patient Information and Consent

 Einverständnis (Deutsch)
 Consent Form (English)

Clinical Data Sheets

 Anforderungsschein (Deutsch)
 Requisition Sheet (English)

HLH

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?

Contact 

German Study Coordination
Prof. Dr. med. Gritta Janka
Tel. +49 (0)40 7410-54369
cell phone +49 (0)172-5447780
Fax +49 (0)40 7410-53608
janka@uke.de         

German Immunological Study Coordination
Prof. Dr. med. Stephan Ehl
Tel. +49 761 270-77300
Fax +49 761 270-77600
stephan.ehl@uniklinik-freiburg.de
Advanced Diagnostics
Ilka Fuchs
Tel. +49 761 270-71010
Fax +49 761 270-77600
ilka.fuchs@uniklinik-freiburg.de


Mail German Immunological Lab
CCI Advanced Diagnostics
University Medical Centre Freiburg
Breisacher Str. 117, 2.OG
D-79106 Freiburg

HLH Advanced Diagnostics: What do we need?

  • Print out Clinical Data Sheet (Deutsch or English - see above) and fill in
  • Please send together with patient blood samples (2-3 ml serum plus 10 -15 ml EDTA blood) plus ca. 10 patient hairs plus 10 -15 ml EDTA blood of a healthy control to Uniklinik Freiburg – CCI Advanced Diagnostics, Breisacher Str. 117 – 2. OG, 79106 Freiburg, Germany. For patients with German health insurance: please include transfer form (Überweisungsschein)
  • Please announce shipment in advance (via email or phone, see Contact)

Patient Inclusion and Exclusion Criteria

Inclusion

  • All newly diagnosed patients who fulfil the diagnostic criteria of HLH
  • Age < 18 years at onset of therapy
  • No prior cytotoxic or cyclosporin A treatment for HLH
  • Informed consent is available
  • Patients >= 18 years or patients with XLP, Chediak-Hegashi-syndrome, Griscelli syndrome and similar syndromes, as well as patients with macrophage activation sndrome secondary to known rheumatoid diseases may also be registered, and will be studied separately. 
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