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Histiocytosis Treatment

Two women doctors talking and walking in hallway

Histiocytosis is a name for a group of syndromes that affect cells of the immune system. Children with these conditions have too many white blood cells called histiocytes.

These white blood cells build up in different parts of the body. This buildup can cause tissue damage and may cause tumors to develop.

There are 2 main kinds of histiocytosis along with other rare histiocytic disorders:

Other rare disorders: Rosai-Dorfman disease (RDD), juvenile xanthogranuloma (JXG), and Erdheim-Chester disease (ECD)

Histiocytosis care at St. Jude

St. Jude provides the highest quality of care for patients with histiocytosis. Our treatment team has unique expertise in diagnosing and treating histiocytosis.

Our team of experts specializes in treating children with Langerhans cell histiocytosis (LCH) and hemophagocytic lymphohistiocytosis (HLH). These experts work together to craft a treatment approach that is best for each child.

Histiocytosis clinical trials

HLHRUXO: Ruxolitinib Therapy for HLH

Study goal:

This main goal of this study is to find out if ruxolitinib will improve the survival rate for children with HLH.


6 weeks to 22 years old

HSESID: Database for HLH Immunodeficiency Disease

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.

TBANK: Collecting, Banking, and Distributing Human Tissue Samples in St. Jude Biorepository

Study goal:

To provide a high-quality repository of tumor and normal samples to facilitate translational research performed by St Jude faculty and their collaborators

NMDPD: Marrow Donor Database Clinical Trial

Study goal:

The purpose of this study is to collect information from the medical records of patients receiving an unrelated transplant. Information in this research database may be helpful towards improving the results of future patients receiving transplants.

GENEFU: Long-Term Follow-Up of Patients Who Received Gene Therapy or Gene Marked Products

Study goal:

To find out if infants, children, and young adults develop any side effects months or years after receiving a gene transfer product as part of a research study or related treatment at St. Jude Children's Research Hospital.

LCH-IV: Affects of Tailored Treatments for Langerhans Cell Histiocytosis

Study goal:

The main goal of this study is to see how tailored treatments affect LCH in children and adolescents.


Younger than 18 years old

Why St. Jude for histiocytosis treatment?

  • St. Jude has the largest group of histiocytosis experts in the southeast United States.
  • St. Jude is the coordinating center for the North American Consortium for Histiocytosis (NACHO). NACHO’s member hospitals work together to develop and test treatments. St. Jude patients who qualify may take part in NACHO clinical trials if they choose.

At St. Jude, your child’s care team includes doctors working to cure the disease and services in nutrition, rehabilitation, neurology, surgery, nursing, education, endocrinology, and psychology. This expert team supports each child through diagnosis, treatment, and recovery.

More reasons to choose St. Jude for care include:

  • At St. Jude, we have created an environment where children can be children and families can be together.  
  • St. Jude patients and families never pay for services authorized by St. Jude. 
  • The nurse-to-patient ratio at St. Jude is unmatched. It is about 1:3 in hematology and oncology and 1:1 in the Intensive Care Unit. 
  • Patients may be able to get expert, compassionate care and treatment closer to their homes through the St. Jude Affiliate Program. 

What to expect during your visit

When your child has symptoms of histiocytosis, providers will do tests to learn more about your child’s condition. These may include:

  • Blood tests: Doctors take a blood sample. It is sent to a lab. Scientists test the sample to see whether there are too many of certain types of immune cells and if they are overactive. But blood tests alone are not enough for a diagnosis.
  • Imaging studies: These tests take images inside the body to look for signs of histiocytosis. These tests may include:
  • Genetic testing: Some cases are caused by changes (mutations) in certain genes. Scientists can test those genes for changes.
  • Biopsy: Doctors often need to get a small tissue sample to make a diagnosis. Samples may be taken from the skin, bone, lymph nodes, liver, lung, or bone marrow.

Learn more