Patients of all ages with a previous diagnosis, suspected diagnosis (per treating oncologist/surgeon) or recent/current confirmed diagnosis of relapsed and/or refractory hepatoblastoma are eligible to enroll in the registry study. The registry collects clinical data from medical records from all patients who agree to participate, and tissue samples will be collected if available from patients.
If contacting the Registry on your patient’s behalf, you must receive the permission of the patient and/or family to share contact information, such as email or phone number. Alternatively, you may direct the family to contact the Registry directly to set up a time for a phone consent with our research coordinator. Should your patient wish to participate in the Registry, the following procedure will be followed with them directly by our research coordinating team to obtain their consent:
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, the patient/family will receive a copy of the informed consent by email. It is IMPORTANT that the patient/family do not sign the consent forms emailed to them until after they have spoken with a member of the Registry staff on the scheduled phone call.
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, the patient will be enrolled and Registry staff will work with the patient’s hospital to collect the relevant medical information needed. If the patient is having an upcoming surgical procedure and they or their family 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.