A Registry Study for Children with Atypical Teratoid Rhabdoid Tumor (ATRT)

Study on ATRT in Kids

S
Scott Coven

Primary Investigator

Enrolling By Invitation
100 years or below
All
Phase N/A
1 participants needed
2 Locations

Brief description of study

 

Study goals:

  • To analyze the significance of treatment, clinical and molecular variables in predicting progression free survival (PFS) at 6 months (PFS6) from date of diagnosis.
  • To create a well annotated ATRT biorepository for current and future studies through the collection of biospecimens, imaging and key clinical data.
THIS STUDY IS ENROLLING BY INVITATION ONLY - Consistent with most oncology trials, patients are not actively “recruited,” but are screened by their physician for appropriate clinical trial(s) at the time of their routine clinic visit. Occasionally, a patient may be a self-referral or physician referral, but are still screened for appropriate clinical trials at the time of their routine clinic visit. PI and staff may send copies of relevant consent forms to these patients to look over prior to actually consenting or enrolling them. This may take place at the patient's visit at which the consent is presented or the patient's next visit to the outpatient hematology/oncology clinic. 
 
Interested in participating? For more information about this research study or other cancer-related clinical trials at IU Simon Comprehensive Cancer Center, please contact:
IU Clinical Trials Office 
Phone: (317) 278-5632

Detailed description of study

This is a registry study that will analyze biospecimens, imaging and clinical data. 

There is an optional specialized tumor board for participants with recurrent/progressive/refractory disease.  

Participants will be followed until they are 5 years from initial diagnosis.

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: Atypical Teratoid Rhabdoid Tumor, ATRT, Riley
  • Age: 100 years or below
  • Gender: All

Inclusion Criteria
3.3.1 Participants must have a pathologic diagnosis of ATRT. The diagnosis must be
supported by (1) immunohistochemistry demonstrating loss of INI1 or BRG1 or
(2) identification of a pathogenic alteration in SMARCB1 or SMARCA4.
Participants with extra-neural metastases/synchronous tumors (M4) are eligible.
Participants of all ages are eligible.
3.3.2 Submission of tumor tissue, prior submission of tumor tissue to Children’s Brain
Tumor Network (CBTN), or report from a CLIA (or equivalent) approved
laboratory with molecular subgroup analysis is mandatory (tissue may be from
initial diagnosis or relapse).
3.3.3 Co-enrollment on Protocol for Children and Young Adults with a Central
Nervous System (CNS) Tumor to Assess Cognitive, Quality of Life (QOL), and
Comprehensive Effects of Therapies (PNOC-COMP) is strongly encouraged
when subjects are eligible.
3.3.4 Participants may be alive or deceased.
3.3.5 A legal parent/guardian or participant must be able to understand, and willing to
sign, a written informed consent and assent document, as appropriate.
 

Exclusion Criteria
3.4.1 Participants without at least one of the following: tumor tissue available, tumor
tissue previously submitted to CBTN, or an approved report with molecular
subgroup determination from a either a CLIA certified laboratory or equivalent
will not be eligible.

This study investigates Atypical Teratoid Rhabdoid Tumor (ATRT) in children. ATRT is a rare and fast-growing cancerous tumor that usually starts in the brain and spinal cord. The purpose of this study is to understand how different treatments and clinical factors affect the disease and to create a collection of samples and data for future research.

Participants will provide biospecimens like tissue samples, imaging, and clinical data. The study will also offer an optional special review board for those with recurring or worsening disease. Participants will be followed for up to five years from their initial diagnosis.

  • Who can participate: Children and individuals of all ages with a confirmed diagnosis of ATRT can participate. The diagnosis must show loss of specific proteins or genetic changes. Participants can also have other tumors.
  • Study details: Participants will provide tumor samples and may join another study on the effects of therapies on life quality. Consent from a parent or guardian is needed.
Updated on 19 May 2026. Study ID: PHO-PNOC-PNOC030, 25432
Please visit our main page to search for other studies you may be interested in. If you need help finding a study or have any questions, please contact us at inhealth@iu.edu

Interested in the study?

This study is accepting only persons who receive care at a certain clinic or doctor or who are part of an invited group. Questions about this study can be directed to the study team listed in the description or contact your doctor to see if you are eligible.

Accepting Referrals by Invitation Only