Frequently Asked Questions
For additional information about registries and how they work, check out "http://www.nih.gov/health/clinicaltrials/registries.htm"
Anyone in the world who has been diagnosed with a rare brain tumor can join.
After you have provided your consent, your doctor will submit specific medical information from your childs past medical record and any current or future medical records.
Your doctor can show you the form used to collect your information. The form will be used to collect yours, your childs name and contact details, and diagnosis. Your doctor will provide details of your child’s condition prior to tumor diagnosis, your childs surgery, and any test your child’s MRI test results as well as any tests performed on your child or your child’s tumor to establish a diagnosis. If you have granted permission, your doctor may include cancer relevant information about your family if you agree to share this information with the registry.
As this clinical registry is set-up to study not only what types of existing treatment may work but also to discover new types of treatment for rare brain tumors, the doctors and researchers need to study large number of tumor samples. To establish a tumor bank that can be used for many different research studies now and in the future, the rare brain tumor registry is also requesting from families and their doctors to send tumor tissue to be banked at a central tumor bank at the Hospital for Sick Children. Your doctor/hospital will need your consent to send this tumor tissue to the RBTC tumor bank, and will then organize for it to be shipped from your local hospital to the Hospital for Sick Children in Toronto where the registry is currently housed. In addition to tumor, the RBTC also request that some of the patient’s blood be sent to the bio-repository for research studies.
Tumor samples and blood sent from patients all over the world will be contained in one tumor/tissue bank, and will be shared with all qualified doctors and scientist who have an interest in specific types of rare tumors. The interested doctors/scientist will need to make a request to the RBTC and registry to access the materials – this request will be reviewed by our scientific advisory board which represents doctors/researchers from different countries and permission to access tissue and/or blood will be granted once the advisory panel has approved the request. Tumor samples and blood sent to the RBTC will become the property of the tumor bank. All samples will be de-identified, and processed to get DNA or RNA for analyses –which are not readily traced back to the original donor. It is the policy of all hospitals that some of the patient’s tumor sample be kept in the hospital, unless the parents have grant permission to have all of the materials sent, thus in most cases some of the tumor material will remain at the original hospital.
When the RBTCR receives your information, your child’s personal information is separated from their medical information. Your child will be assigned a case number. This number helps to keep your child’s identity a secret. A list will keep track of your personal information and the secret number assigned to you. Only your doctor and the authorized RBTCR staff will have access to this list. Only your doctor and the authorized RBTCR staff will be able to see your personal and medical information together.
The care your child will receive from his doctor will not change, nor will that of any of your family members.
Your participation in the RBTC is voluntary. You are able to leave the registry at any time. If you decide to leave, you can choose to stop adding new information to the RBTC and you do not have to give a reason. Your choice to withdraw will not affect your current or future health care. If you want to withdraw, you can tell your doctor or contact the RBTC at firstname.lastname@example.org
Please let your doctor know your new address or name change so that this information can be updated in the registry.
If you are reaching the age where you become an adult in your country, you may request information outlining your participation in the registry. If you wish to continue you will be asked to complete an Adult Consent Form. Your medical data will continue to be entered as usual. If you choose not to participate you can opt to withdraw as above.
Participation is entirely voluntary: there is no cost to you for participating in the registry nor will you be paid for your participation.
Diseases will be added to the indexed diseases list one by one over a period of time. If your disease is not currently included on the list of indexed diseases, with your consent, your name, contact details and diagnosis can be added to the registry. When the RBTC begins more detailed data collection in your particular tumor you will be contacted and provided with all the forms and information needed to get started. We will also keep you informed if any research opportunities arise.
We always recommend that you contact your child's physician to see if it's possible to register your child. Or you can contact directly the RBTCR.
There are no risks to your physical health from participating in the RBTC. No procedures or treatments are required to be part of the RBTC. You do not need to make any extra visits to your doctor. There is a possible risk for a loss of privacy if a breakdown in the RBTC security system occurred. Everything possible will be done to prevent this risk.
Yes, you can still sign up. There is no problem if you are participating in other registries or databases. In fact one of the goals of the RBTC is to connect with other data-entry personnel will be provided with user privileges and secure log-in information for data entry. Physicians involved in patient recruitment can also be provided with user and local administrative privileges. Data will be segregated, so that only the treating physician will be to view the patient's original data.
By providing high-quality data on patients with rare brain tumors across the world, the RBTC hopes to improve the opportunities for research and clinical trials for patients worldwide.
The RBTC aims to connect healthcare professionals intrested in rare brain tumors worldwide. We hope to provide you with comprehensive communication regarding best practices in treatment and research opportunities. Additionally, you have the opportunity to join RBTC disease working groups that develop and review the indexed disease datasets. The RBTC accepts research proposals from investigators for relevant research.
The RBTC is affiliated with Principal Investigators at more than 70 international academic institutions (please see the list of Our Collaborative Network on the page "About Us"). You can start by directly contacting one of the Principal Investigators or the RBTCR.