Patients and/or their parents or guardians who would like learn more about participating in the registry should contact the registry office directly.
Once you contact the registry office a member of the registry staff will get back with you promptly about the next steps to join the DIPG Registry.
To officially enroll in the registry, a member of the registry staff will need to set up a date/time to call you to talk about the DIPG Registry and answer any questions that you may have. Before the call, we will fax, e-mail, or mail you information about the registry, including a document (consent form) that patients over 18 or a parent/guardian (for patients young than 18) will sign to show that they agree to participate and give permission for their doctor and hospital to send information and tumor samples, if available, to the registry. The consent process for the International DIPG Registry study will take around 15-30 minutes to complete. Once we receive the signed consent, registry staff will work with your hospital to collect the information and samples that we need.
When a patient has died, families may still contact the registry to provide permission to access the decedent’s medical information. Registry staff will send a HIPAA release form to the parents/guardians.
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.