Physicians and medical staff may provide patients with the DIPG Registry brochure (link to brochure) which includes general information about the registry and the registry’s contact information.
Patients and/or their parents or guardians who would like learn more about participating in the registry should contact the registry office directly.
A member of the Registry staff will then contact the patient or parent/guardian (for minor patients) to obtain consent for information and samples to be sent to the registry. Registry staff will explain how the registry works and answer any questions over the telephone, and consent forms will be sent and returned after signature by e-mail, fax, or postal mail. Patients and/or parents/guardians will sign a form allowing their hospital to release medical information and tumor samples, if available, to the registry as part of the consent process. When possible, written assent to participate will also be obtained from patients 11 years old and older, but this is not required for participation. Once written consent has been obtained, registry staff will work with the medical center where the patient is being treated to collect information, images, and samples for the registry.. A sample of the consent can be found here (link to consent).
For living patients, registry staff will contact
If the patient has died, families may still contact the registry to provide permission to access the decedent’s medical information. Registry staff will provide a HIPAA release form to the parents/guardians.
For more information in collaborating with the Registry please see Institutional Collaboration.
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.