How to Enroll
Patients of all ages with a suspected diagnosis (per treating oncologist/surgeon) or confirmed diagnosis of relapsed and/or refractory hepatoblastoma (rrHBL) 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 in the Registry, please follow the procedure outlined below:
1) Contact the Registry at 844-722-8774 (Option 1) or rrHBLRegistry@cchmc.org
2) Schedule a date/time to discuss the rrHBL Registry and enrollment process (this phone call will take approximately 15-30 minutes)
3) 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. You may use the link below to see a copy of the consent prior to contacting the Registry (this version will not have a signature page).
4) If interested in proceeding with enrollment, 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.
5) Upon receipt of the consent forms, you or your child will be enrolled and Registry staff will work with your or your child’s hospital to collect the relevant medical information. If you or your child are having an upcoming surgical procedure and 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.