Enroll a Patient
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 the time of initial diagnosis 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.
For both situations, you or the patient/family should contact the rrHBL Registry at rrHBLRegistry@cchmc.org or 844-722-8774 (Option 1) to begin to the process. If the patient/family decides to officially enroll, we will need to follow a specific consenting procedure outlined 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, a survey link will be sent to the patient/family.
- Teleconference or Videoconference Consent: If the patient/family 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, 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.
- If interested in proceeding with enrollment, the patient and/or family 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, 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 their 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.