Enroll your patients

Enroll your patients

Medical professionals are welcome to refer your patients to join the registry according to the following guidelines.

Eligibility

All patients of age of 21 or under who have or have had a rare brain tumor are eligible to enroll in the registry. The registry collects information and samples from both living and deceased patients.

Enrollment process

Registry investigators, other treating physicians, and pathologists may refer patients (or patient cases if the patient is deceased) to the registry. Referring physicians and pathologists should obtain verbal or written permission from the patient or parent/guardian for consent and then contact the registry office.

New registry investigator will be provided with a User ID and initial password at registration. Registry staff will explain how the registry works and answer any questions over the telephone, and consent forms will be sent and returned after signature by e-mail, fax, or postal mail. Patients and/or parents/guardians will sign a form allowing their hospital to release medical information and tumor samples, if available, to the registry as part of the consent process. When possible, written assent to participate will also be obtained from patients 11 years old and older, but this is not required for participation. Once written consent has been obtained, registry staff will work with the medical center where the patient is being treated to collect information, images, and samples for the registry.

Contact Us

  • Address:

    Huang Lab Sickkids Hospital
    17,9410Q-PCGRL, 686 Bay St.
    Toronto Canada

  • Phone: (416) 813-7654 Ext 304362

  • Email: rbtc.sickkids@gmail.com