For Doctors & Researchers

What do we collect?

Tissues and clinical data on rare embryonal tumors

ATRT BAF47 X20
ATRT

ATRTs (atypical teratoid rhabdoid tumors)

Also called rhabdoid tumors

C19MC FISH ETMR
ETMR

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
Pineoblastoma

Pineal region tumors

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

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

ClinicalData_Icon

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
Biomaterials_Icons

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
Canada
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