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Collecting information on how hemophagocytic lymphohistiocytosis develops and is treated

Gathers health information from people with hemophagocytic lymphohistiocytosis over time.

Key facts

Who runs it
Children's Hospital Medical Center, Cincinnati
Where
Cincinnati, United StatesSee the site
Trial code
Registry title
INTO-HLH: A Disease Registry for Patients With Hemophagocytic Lymphohistiocytosis (HLH)
Status
Recruiting
People taking part
200 people, planned
Started
31 Dec 2021
Expected to end
Jan 2027
Type of study
Observational
Record updated
24 February 2026

Who can take part

Sex
Women and men
Healthy volunteers
Cannot take part

The registry criteria, word for word

Show all 3 criteriaShow less

Who can take part

  • 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)

Who cannot take part

  • None

Where in United States

  • Cincinnati Children's Hospital Medical CenterCincinnati, United StatesContact: Michael Jordan, MDTaking people

About the trial

What the trial wants to find out

The purpose of this observational study is to collect data on the natural history of disease of patients with Hemophagocytic Lymphohistiocytosis (HLH) including diagnosis, treatments, responses, and outcomes.

The group in the trial

  • Patients with clinically suspected or confirmed Hemophagocytic Lymphohistiocytosis

    Multi-institutional cohort registry of patients with clinically suspected or confirmed Hemophagocytic Lymphohistiocytosis

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
INTO-HLH- Insight Into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis (HLH): A Disease Registry for Patients With HLH
Plain-language title
Collecting information on how hemophagocytic lymphohistiocytosis develops and is treatedGenerated from the registry record. The registry title is the official one.
Record updated
24 February 2026