Registry for patients with Hemophagocytic Lymphohistiocytosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to collect comprehensive data on the natural history of Hemophagocytic Lymphohistiocytosis (HLH), including aspects such as diagnosis, treatment responses, and patient outcomes. The study seeks to address the significant gaps in understanding the clinical diversity and complications associated with HLH, particularly in North America. By establishing a robust registry, the collaboration between Cincinnati Children's Hospital Medical Center, Texas Children's Hospital, and Sobi Inc. will facilitate better insights into HLH and potentially guide future treatment strategies.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Patients with clinically suspected or confirmed HLH, including those meeting the HLH-2004 diagnostic criteria (primary or secondary forms, including malignancy) and other forms of HLH (macrophage activation syndrome \[MAS\], cytokine release syndrome \[CRS\], etc.)
* Signed and dated informed consent and assent (adolescents)

Exclusion Criteria:

* None

Where it's running

• Cincinnati Children's Hospital Medical Center
  Cincinnati, Ohio, United States Recruiting

Study contacts

• Study coordinator: Michael Jordan, MD
• Email: Michael.Jordan@cchmc.org
• Phone: (513) 803-9063

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• National Egyptian HLH Registry for pediatric patients

  A national HLH registry is being created in Egypt to collect information about pediatric HLH patients to improve understanding and care.

  Recruiting Ain Shams University · Cairo and 1 other locations · NCT07800234

• Using ruxolitinib with a modified HLH-94 regimen to treat hemophagocytic lymphohistiocytosis.

  This study is testing if a new combination of ruxolitinib and a modified treatment plan can help adults newly diagnosed with hemophagocytic lymphohistiocytosis feel better and live longer.

  Recruiting at 4 sites Phase 2 University of California, San Francisco · Irvine, California and 3 other locations · NCT06160791

• Understanding treatment outcomes in lymphoma-related hemophagocytic lymphohistiocytosis

  This study looks at how people with lymphoma who develop a serious condition called hemophagocytic lymphohistiocytosis are treated and what the outcomes are, to find better ways to help them survive.

  Recruiting University of Alabama at Birmingham · Birmingham, Alabama · NCT05898477

• Validation of the OHI Index for Hematologic Malignancies

  This study is testing a new index to see if it can help doctors better understand and predict outcomes for patients with blood cancers who might develop a serious condition called HLH.

  Recruiting at 2 sites Meir Medical Center · Kfar Saba and 1 other locations · NCT05882175

• Registry for monitoring CytoSorb device use in critically ill patients

  This study is collecting information on how the CytoSorb device helps critically ill patients to improve care for conditions like septic shock and acute respiratory distress syndrome.

  Recruiting at 24 sites CytoSorbents, Inc · Klagenfurt and 27 other locations · NCT05146336

• Observational study on adult hemophagocytic lymphohistiocytosis

  This study is looking at adults with hemophagocytic lymphohistiocytosis to learn more about their symptoms and how they respond to treatments like immunosuppressive therapy or chemotherapy.

  Recruiting Samsung Medical Center · Seoul · NCT03117010

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.