Skip to Main Content

HSESID: Database for HLH Immunodeficiency Disease

About this study

Hemophagocytic lymphohistiocytosis (HLH) is a rare, life-threatening condition that affects the body’s immune system. The disorder most often is seen in babies and young children. This study will collect information about HLH patients’ symptoms, laboratory values, treatment, and outcomes.

Eligibility overview

  • Diagnosis of a primary immunodeficiency predisposed to HLH
  • Meets at least 4 of the 8 diagnostic criteria for HLH and is receiving HLH-directed therapy
  • High suspicion of isolated Central Nervous System-HLH and is receiving HLH-directed therapy

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.


Full title:

A Registry for Hemophagocytic Lymphohistiocytosis (HLH)

Study goal:

The main goal of the study is to create an international database of HLH patient information. This information will help researchers develop clinical trials in the future on new HLH treatments.

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.


Learn more