How to Enroll

Patients of all ages (living or deceased) with a suspected diagnosis (per treating oncologist/surgeon) or confirmed diagnosis of relapsed and/or refractory hepatoblastoma (rrHBL) and all patients with Hepatocellular Neoplasm – Not Otherwise Specified (HCN-NOS) who are <6 years of age at time of initial diagnosis are eligible to enroll in the Registry. The Registry collects clinical data from medical records, copies of imaging and reports, and pathology slides from all patients who agree to participate. Tumor tissue samples will be requested for collection and storage (for future biological research), as well as development of new tumor models when feasible.

If you are interested in enrolling yourself or your child contact the rrHBL Registry at rrHBLRegistry@cchmc.org or 844-722-8774 (Option 1). We will follow a specific consenting procedure outline by Cincinnati Children’s Hospital.

We have two convenient ways to join the registry:

  • Electronic Consent via REDCap: The eConsent offers a self-guided consenting option to the registry. If interested in this option, you will be sent a survey via email.
  • Teleconference or Videoconference Consent: If you prefer to speak with someone directly, a rrHBL Registry staff member will work to set up a consent meeting via teleconference or videoconference in order to review the consent form and answer any questions. This consent process will take around 15 minutes.
    • Prior to the scheduled call, you will receive a copy of the informed consent by email. It is IMPORTANT that you do not sign the consent forms emailed to you until after you have spoken with a member of the Registry staff on the scheduled phone call.
    • o If interested in proceeding with enrollment, you will sign and date the consent form and return a copy of the signed form to the rrHBL Registry office by email (rrHBLRegistry@cchmc.org), fax (513-487-5511), or mail.
    • Upon receipt of the consent forms, you or your child will be enrolled and Registry staff will work with their hospital to collect the relevant medical information needed. If having an upcoming surgical procedure and you wish to donate any leftover tissue to the Registry, please notify us and Registry staff will work with your hospital for the proper preparation and shipment of samples.

If the patient is deceased, the family/LAR may still provide permission to include the patient’s data in the rrHBL Registry by filling out and returning an Authorization for Disclosure of Protected Health Information form, provided by the rrHBL Registry staff upon initial contact.