Patients and/or their parents or guardians who would like learn more about participating in the registry should contact the registry office directly.
A registry is a place that stores clinical data and a repository is a place to store tumor samples in a central location. All patients of any age who have or have been diagnosed with a DIPG are eligible to join in the registry. The registry collects medical information and available tissue samples. The goal of this research project is to find better treatments and ultimately a cure for DIPG.
To officially become a part of the registry, we need to follow a specific procedure outlined by Cincinnati Children’s Hospital. The steps below outline this enrollment process:
- A DIPG Registry staff member will ask to set up a date/time to talk on the phone for 15-30 minutes to discuss the details of the DIPG registry and repository.
- Before the call, you will receive a copy of the informed consent form by email or you can obtain a copy of the consent here to read. (link to consent).
- IMPORTANT: Please do not sign the consent form until after talking with a DIPG Registry staff member.
- AFTER you speak with a member of the registry team about the DIPG registry and repository and answer any questions you may have, you can then decide to join the DIPG Registry. I you want to enroll, you will sign and date the consent form and return the signed form to the DIPG Registry office by email, fax or mail.
- Registry staff will then work with your son or daughter’s hospital to collect the medical information we need to store in the DIPG registry and repository.
If your son or daughter has passed away, you may still provide permission to include your son or daughter’s information in the DIPG Registry by filling out the HIPAA release form below and sending to the DIPG registry research team.
Privacy and the protection of patient data:
Protecting the privacy of participants in the registry and the security of personal information is very important to the registry. The registry has been reviewed and approved the Institutional Review Board (IRB) at Cincinnati Children’s Hospital Medical Center in accordance with applicable National Institutes of Health and Food and Drug Administration regulations as well as AAHRPP accreditation standards.
The registry will make every effort within the limits imposed by technology and the law to protect records so that patients’ identifying data are kept private. All clinical, neuroimaging, and pathology data will be de-identified (so that details that could identify a specific patient are removed) prior to being entered into the registry or released to researchers. Any biological material available is also de-identified prior to entry into the repository. Access to the pathologic and molecular biology bioinformatics repository will be password-protected and limited to authorized investigators. Requests for data for research studies must be approved by the registry leadership committee and will be subject to standard guidelines for the protection of human research subjects. When appropriate, external investigators given access to registry or repository data will be required to enter into confidentiality agreements. While the registry will take every precaution possible, there is always a risk that information in the registry or associated repositories might be accessed without authorization or released inappropriately.
Results of research studies on specific specimens will not be released to patients or parents/guardians. However, results of research studies using the registry will generally be published, and links to these results will be posted on this site when possible. Registry data or the results of research studies carried out using registry data that are published or presented cannot be traced to individual patients.