Rare Tumors Program

Registries

Texas Children’s Cancer Center has developed registries for multiple pediatric rare cancers. Over the years, clinical trials have led to significant advances for many childhood cancer patients with more common diagnoses. Unfortunately, clinical trials are often unavailable for these patients due to the low incidence of pediatric rare cancers. The purpose of these cancer registries is to collect health information and biological samples from children with rare cancers.

Eligibility

Children who have been diagnosed with a rare cancer anywhere in North America are eligible to participate. The registries are open to all patients, regardless of whether they are a patient at Texas Children’s.

What to expect

If you are interested in participating, we will mail you the registry consent forms and explain the study over the phone. After we receive your signed consent forms, we will mail you a saliva kit with collection instructions. In addition, we will obtain your medical records and tumor tissue from your primary treating institution.

The information collected from multiple study patients with the same diagnosis will be used to better define the natural history, effective treatments and outcome of rare cancers. Collected, deidentified tissue samples will be stored in a central biobank. The purpose of this collection is to make samples available for use in research of rare pediatric cancers during and after this study is completed. We plan to study the genetic structure of the rare cancers which will help us better understand their pathogenesis and hopefully will lead to better treatments.

Available registries

Angiosarcoma

BCOR-mutated sarcoma

Hepatocellular carcinoma

Inflammatory myofibroblastic tumor 

Neuroendocrine tumor

Salivary gland tumor

Thyroid cancer

Undifferentiated embryonal sarcoma of the liver

How to participate

For more information on the registry and to find out if your particular diagnosis is included in the registry, email us at raretumors@texaschildrens.org or call us at 832-824-6835.