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.
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
We are conducting a research study to determine if we can accurately and reliably measure four physical fitness measures remotely. Participants in this study will first complete two questionnaires. One questionnaire will ask questions about their socio-demographic profile as well as their cancer treatment. The second questionnaire is a screening tool to assess if it is safe to engage in physical activity. Next, participants will complete three physical function assessments over a period of two weeks. All assessments will consist of the same four physical fitness measures: the two minute step test, the sit-to-stand test, the one leg stance test, and the sit-and-reach test. Two assessments will be conducted remotely from the participant’s home, and the last assessment will be conducted in person at the Holy Cross Center in Calgary. Participants will receive a $25 gift card as a token of appreciation.
Who Is Eligible?
To be eligible, participants must be between 18 and 80 years old, reside in Calgary, Alberta and be able to travel for one in-person assessment, have a previous diagnosis of cancer (excluding non-melanoma skin cancer), have completed cancer treatment (surgery, chemotherapy, and/or radiation), be able to speak, read and understand English, have access to and comfort using a computer or tablet and videoconferencing software, be free of impairments, disabilities or other pre-existing limitation that would prevent them from engaging in light physical activity, and have a friend or family member who can be present during remote assessments. Individuals are not eligible if they have previously participated in an exercise or fitness-based research study or program (for example, the Alberta Cancer Exercise Program).
For more information please contact – Madison.leia@ucalgary.ca
Through a virtual focus group or interview, researchers at Horizon Health Network (HHN), Maritime SPOR Support Unit (MSSU), and University of New Brunswick – Centre for Research and Integrated Care (CRIC) are currently looking for individuals to participate in a research study that aims to identify Compensation-Related Barriers and Facilitators to Patient Engagement in Canadian Health Research. The team would like to know their experiences with what works and what does not work for compensating patient partners, and how this affects inclusion.
Who Is Eligible?
Currently recruiting the following groups with experience conducting or supporting Canadian patient-oriented research:
For more information please contact Sam at (506) 566-2728 or email samantha.fowler@horizonnb.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
In this survey we are asking the AYA cancer community to pick which questions are the most important to be answered by research. The results of this second survey will inform the “Top 10” list of research priorities to guide the future of AYA cancer research in Canada. The results of the survey will be used to establish a new, national research agenda for AYA cancer in Canada.
Who Is Eligible?
For more information please visit – www.ayacancerpsp.ca
Who Is Eligible?
For more information please contact Whitney Qualls – whitney_qualls@sfu.ca
In order to develop policy and resources that target young caregivers, we are conducting interviews to understand factors of resilience and vulnerability that either facilitate or hinder development and wellbeing.
Who Is Eligible?
A young caregiver (16-25 yrs old) of person(s) with a neurodegenerative disease (Dementia, Parkinsons, MS, ALS, or a Neurological Disorder (Stroke, Brain Tumour)
For more information please contact – ycs@torontomu.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
