What do we collect?

Tissues and clinical data on rare embryonal tumors


ATRTs (atypical teratoid rhabdoid tumors)

Also called rhabdoid tumors


ETMRs (embryonal tumor with multiple rosettes)

Also called:

  • C19MC-altered tumors
  • Embryonal tumor with abundant neuropils and true rosettes (ETANTR)
  • Medulloepithelioma
  • Ependymoblastoma

Tumors formerly PNET, sPNET, or CNS-PNETs including:

  • Embryonal tumor with FOXR2 activation
  • Embryonal tumor with BCOR alteration
  • Embryonal brain tumors NOS
pineoblastoma HE_002

Pineal region tumors

  • PPTID (pineal parenchymal tumor of intermediate differentiation)
  • Pineoblastoma

We are interested in collecting some or all of the following:


1. Clinical data including:

  • Demographics (age, sex, etc.), tumor location, staging, pathology reports, any molecular work-up data
  • Imaging—MRI brain and spine imaging at diagnosis and relapse
  • Treatment information and patient disease course
  • Tumor or blood DNA and RNA

2. Biomaterials

  • Tumor tissue in all available forms:
    • Fresh and frozen tumor tissues – preferred
    • Archived specimens preserved formalin and embedded in paraffin (FFPE); slides/blocks
    • Patient tumor-derived cell lines or fresh viable tumor to establish cell lines or xenografts
  • Blood
  • Cerebrospinal fluid
  • Tumor or blood DNA and RNA.

Biospecimen collection process

We collect tumor, blood and CSF (spinal fluid) from all patients if available. Processing steps for biospecimens are summarized in figures 1 - 3 below.

Please ensure tubes/samples are labeled in accordance to your hospital policies.
Please provide us with the following information separately:

  • Unique identification number
  • Gender and date of birth or age
  • Date of collection
  • Specimen source (CSF, lumbar, shunt or EVD)
  • Time point of collection (diagnostic, intraoperative, or during therapy)

Please ship samples at the beginning of the week to:

Mei Lu/Huang Lab
Hospital for Sick Children
PGCRL 17,9410Q
72 Elm Street Toronto, ON M5G 1H3
Tel: 1-416 813 7654 ext.304362
Email: meilu@sickkids.ca

How do I enroll my patient and why?

If you have a patient with an expected or diagnosed rare brain tumor:

Option 1:

Contact us at rbt.consortium@sickkids.ca

Option 2:

Direct data entry—fill out our RedCap enrollment form!

  • We will send you all necessary paperwork and instructions for collection of clinical data and preparation and shipping of biomaterials
  • The RBTC covers shipping costs
  • The RBTC will share any data concerning your patient, including molecular analyses once it is available
  • You will become part of a global network and have opportunities to pursue research projects using RBTC data and resources
  • All contributing collaborators share development of manuscripts/reports from the RBTC
Enroll Your Patient Now