Registry Working Party

HLH Study (Registry with the Histiocyte Society)

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The primary goal of the HLH Registry Study in Cooperation with the Hstiocyte Sciety is to collect data relevant for assessment of feasibility and design of future interventional studies on the treatment of HLH. This requires a detailed analysis of the target patient population treated by centers potentially participating in such studies. Another important goal of implementing a HLH Registry is to improve the network of physicians collaborating on HLH and to prepare the infrastructure for a future trial. Implementing routines for patient identification (and central notification), diagnostic algorithms and the use of a GCP database that is fully adapted to running interventional clinical trials are important milestones in facilitating the execution of a clinical trial. 

The key objectives of the HLH registry are to:

  • Collect data relevant for the assessment of feasibility and design of future interventional studies on the treatment of HLH
  • Collect data on current standard of care
  • Collect data on current time to transplant
  • Collect data on outcome 1 year after disease manifestation
  • Collect data on international patient recruitment potential for a trial
  • Improve the infrastructure for a future HLH study (diagnostic evaluation, national coordination, documentation)

Please refer to the dedicated registry for this study:

https://cci-esid-reg-associated.uniklinik-freiburg.de/HLH

Please note that all patients need to be registered through the HLH Study Registration Office, before documentation into the registry in order to assigne a unique Study_ID.

Please contact the Registration Office at: HLH Referenz- und Studienzentrum <hlh@uke.de>