No matter which way you decide to get involved, we thank you!
On this page, you can find links to current research projects that you may be interested in. By sharing your experience and information, you can help researchers and organizations across Canada shape the direction of brain tumour research. Your participation is vital to the progress of these studies and surveys.
PLEASE NOTE: These are third-party studies and surveys that are not conducted or managed by Brain Tumour Foundation of Canada. For more information, please reach out to the contact indicated on each study.
The Canadian Cancer Survivor Network (CCSN) is conducting a survey to better understand the experiences of patients who undergo regular imaging. The insights gathered will help highlight patient perspectives, identify potential gaps in care, and inform future initiatives. Survey results will be shared with a partnering pharmaceutical company and summarized for healthcare professionals.
The survey closes on March 21, 2025.
Our goal is to hear directly from individuals living with rare diseases about their experiences in Emergency Departments, with the ultimate aim being to identify ways to provide better and safer care for patients with rare diseases in a busy ED setting. We are seeking participants who self-identify as having a rare disease to take part in a 30-minute Zoom interview. We plan to interview 25 individuals, and all responses will be de-identified. We will be looking at the interview transcripts for themes. This research has been approved by the Hamilton Integrated Research Ethics Board.
Who Is Eligible?
Any person who self-identifies as having a rare disease.
For more information please contact Corrine Mitges at daviescp@mcmaster.ca
A team at Yale School of Medicine is collecting skull base MRI images to help them train and develop a tool that can automatically generate 3D models of brain tumours. This tool will help doctors and researchers better visualize the size and shape of brain tumours. Additionally, this will allow for a better understanding of tumour growth patterns thus leading to more informed clinical decision making.
Who Is Eligible?
For more information please email 3dtumorlab@yale.edu
Who Is Eligible?
For more information please contact Whitney Qualls – whitney_qualls@sfu.ca
We hope to enroll 2000 people to get a complete picture of what it means to have cancer as a young adult right now. The information you provide will be used to increase awareness and develop programs to address the issues that Young Adults with cancer feel are most important. People living in Canada who are over the age of 18 and were diagnosed with any type of cancer before the age of 40. You will complete an online survey once a year for up to five years. Each survey will take approximately 30-45 minutes to complete.
All you have to do is complete the following link:
Once we confirm your eligibility, you will receive an email with a unique link to complete the survey.
For more information – research@youngadultcancer.ca
The purpose of this study is to develop a checklist to measure how parents/caregivers value genetic testing for cancer. Once developed, this checklist will help provide evidence to guide funding decisions and access to genetic tests for children. Parents and caregivers of a child with cancer or a cancer predisposition syndrome who: Received genetic test results for their child in the past year, received the genetic test results from a doctor or genetic counsellor in Canada, are comfortable communicating in English. Participation in the study involves completing the checklist while reflecting on your child’s genetic test results, and short questionnaires about yourself and their child. The study takes approximately 20 minutes and is completed online. You will receive a $15 coffee card upon completion of the surveys.
For more information on how to participate, please email – pguide.study@sickkids.ca
Some pediatric cancer survivors may experience cognitive difficulties. This study aims to compare different cognitive screening measures to help identity children/youth who need further assessment and resources. Child/Youth: One assessment (at SickKids) of cognitive skills and completing a questionnaire (duration: 2.5 hours) Parent: Five questionnaires to complete on child/youth’s behavior, functioning, and quality of life, and one sociodemographic questionnaire (duration: one hour) Teacher (optional): Two questionnaires to complete on child/youth’s learning and functioning (duration: 30 minutes). Pediatric cancer survivors aged eight to 16 years who are at least one year after the end of treatment, and English speaking. A parent will be invited to participate in the study, and a teacher may optionally be invited to participate.
For more information, please email Sophia Blaikie-Sloan – Sophia.blaikie-sloan@sickkids.ca
Caring Forward is an online study seeking to learn more about the experiences of unpaid caregivers of brain injury survivors living in Canada. The information we receive will be used to create resources and programs that support caregivers and improve well-being. Participants will be asked to fill out a 30-minute online survey once every six months for up to two years. We are seeking individuals who: Are an unpaid caregiver for someone with a brain injury, this person may be a child, a friend, a parent, a spouse, a sibling, or a relative, live in Canada, have access to a tablet, a smartphone, or a computer and are fluent in English.
For more information, please contact us toll-free at: 1-877-341-8309 (ext. 8 or 9) or email caringforward@iwk.nshealth.ca
The study, conducted by the Injury Prevention Research Office and St. Michael’s Hospital in Toronto, Canada aims to measure the effect of visual symptoms on the quality of life in patients with pituitary tumors. Visual symptoms are one of the most common effects of large pituitary tumors. This study is aimed to develop a tool to better measure the effect of these visual symptoms on a pituitary tumor patient’s ability to function in daily life. Anyone who is currently/or has ever been diagnosed with a pituitary tumor. If you are interested in participating in the study by completing the survey, click here. This survey should take about 45 minutes to complete.
If you have any other questions, please feel free to contact us at: injuryprevention@smh.ca
The purpose of this study is to discover why some people develop LGG while other people do not. We also hope to learn more about the effect of this diagnosis and the associated treatments on daily life including the ability to work, drive, sleep, exercise, or take care of oneself and/or family. Any person over the age of 20 years with an initial diagnosis of LGG. Postmortem tissue samples and pathology reports may also be eligible for inclusion in the study. Please email for more information.
For more information: email the study at: glioma@yale.edu
