Get Involved
There are so many ways you can help make a difference in the lives of patients and families today.
Our vision is: To find the cause of and a cure for brain tumours while improving the quality of life for those affected. Research is the key to achieving our vision.
On this page you will find links to current research projects underway that you may be interested in participating in.
NOTE: These are third-party studies, not conducted Brain Tumour Foundation of Canada.
Have you been impacted by adolescent or young adult (AYA) cancer? What do YOU think future research on AYA cancer in Canada should focus on?
Complete the #AYACancerPSP national survey!
www.tinyurl.com/AYACancerSurvey
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.
Who can participate?
Parents and caregivers of a child with cancer or a cancer predisposition syndrome who:
How to participate?
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.
Who can participate?
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 on how to participate, please email Bethany Lerman, Research Coordinator, at:
bethany.lerman@sickkids.ca
Virtue Research is conducting a unique online survey that will help us understand the treatment and management of certain Metastatic Cancers. If you qualify and complete the online survey, you will be compensated $200 for your time (60 mins total of task). You will be paid by check 2-3 weeks after the study has been fully completed. This study will require participation for 10-15min surveys for up to 2 weeks (60 mins total). It will also require access to a computer and an Internet connection with a Web browser.
Who can participate?
People diagnosed with certain Metastatic Cancers within the last three years are invited to participate in a paid online survey that will help us understand the treatment and management of these cancers:
Met Metastatic Cancer Survey Interest Form
For more information or questions, please call or email Shreya Prakash, 425-436-8688 , at:
shreya@endbraincancer.org
We are conducting interviews with persons who have glioblastoma (GBM) as well as caregivers of persons with glioblastoma (or who have since died) to explore their needs and experiences with prognosis disclosure and complex treatment decisions including palliative care. The overarching goal of this project is to improve physician-patient and physician-care partner communications post-GBM-diagnosis by ensuring understanding of prognosis, palliative care, and the patient’s personal preferences. Our team aims to create a decision support tool that ensures prognostic understanding, provides information about care options for treatment and palliation, and allows the GBM patients’ values to be documented.
Who can participate?
Participants must meet the following inclusion criteria:
Individuals who are not able to provide consent or deemed to have low decisional capacity will be excluded.
For more information on how to participate, please email Alixe Ménard, project lead, at:
alimenard@ohri.ca
Optune (Novocure), a medical device, has recently become available in Canada for the treatment of glioblastoma. Optune uses the emerging therapy of tumour- treating fields to target growth of cancerous cells. CADTH is conducting an evidence review of the technology to examine the value of this therapy in treatment.
To enhance the quality and relevance of this work, CADTH is seeking to engage people with personal or professional experience with treatment of glioblastoma in Canada.
Who can participate?
Specifically, CADTH is interested in engaging with health care professionals (e.g., oncology specialists, oncology nurses, social workers, pharmacists, administrators, leadership) and people with experience (e.g., patients, family members, caregivers) with the treatment and management of glioblastoma. In this instance, CADTH is seeking people with the ability to:
Contribute to the diversity of perspectives through awareness of others’ experiences and views within the patient or professional community (for example, experience with a professional or patient association, or as a volunteer, staff member, or board member) act with integrity, independent of specific interests, work constructively as a member of a diverse team. There are a limited number of engagement opportunities available to support this work, including as an expert consultant, peer reviewer, or committee member. The time commitment will vary depending on the role, with engagement activities expected to occur between August 2023 and January 2024. An honorarium will be provided to those selected for the project.
For more information you can reach us through our email at PatientEngagement@cadth.ca or via phone at (403) 210-8482.
The purpose of this study is to understand the relationships between physical activity, body image, and quality of life for young adult (YA) males living with and beyond cancer. We hope the results of this study will inform our knowledge of these relationships, to effectively target body image via tailored physical activity interventions and in turn improve overall quality of life for YA males living with and beyond cancer.
Who can participate?
We are recruiting YA males (biological sex or those who identify as males) diagnosed with cancer between the ages of 20-39, able to speak and understand English, be at any stage of treatment (pre-, undergoing, or post-), and be able to participate in an online questionnaire and an interview online, phone, or in-person.
For more information you can reach us through our email at wellnesslab@ucalgary.ca or via phone at (403) 210-8482.
COVID-19 created challenges for all; however, people living with cancer experienced unprecedented and unique challenges due to their condition and heightened risk of infection.
We are interested in exploring the experiences who those who have lived through COVID19 with cancer, looking specifically at how engaging in protective behaviors (e.g., hand washing, social distancing, mask wearing) differed compared to others. We hope to use this information to better inform our health system on ways to address existing gaps on preventative strategies for infection from COVID19 and similar viral disease.
What you would have to do: participate in a 45-60-minute interview (phone or Zoom)
Compensation: $25 Amazon gift card
Who is Eligible: Cancer diagnosis in last 5 years; resident of Saskatchewan; over the age of 16 years
Should you have any questions or if you are interested, please do not hesitate to contact a member of our study team (Andy) at 587-877-0486 or email at Aim421@uregina.ca.
Among hallmark features of glioblastomas (GBMs) are regions of reduced oxygen supply to tissues below physiologic levels – termed hypoxia. Hypoxia within tumor environment (the environment within a tumour) constitutes a major concern for GBMs because it triggers cancer cell invasion, inhibition of antitumor immune responses, and radio-resistance. The hypoxia tracer (pimonidazole; PIMO) is used as a marker that can be administered to patients prior to surgery and detected in tumour specimens, upon their surgical removal, in order to examine hypoxic regions in the tumour microenvironment. We use PIMO to identify the hypoxic regions in GBM and use state-of-the-art molecular techniques to understand the biological and genetic features of cells that reside in the hypoxic regions. This approach will help identify specific features of hypoxic cells that can then be targeted with new drugs.
We encourage adult GBM patients at Toronto Western Hospital to inquire further, and consent if suitable, to participate in our PIMO study prior to their surgery, so that when the tumor is removed it can be donated to our lab for research on hypoxic regions in the GBM environment. Ultimately, by performing deep molecular analysis of the hypoxic regions we are able to design new strategies to make tumor cells more sensitive to therapy and, thereby, improve the survival of patients with GBM.
Who is Eligible:
Eligible patients are those aged 18 and above with primary or recurrent glioblastoma diagnoses undergoing surgical resection at the Toronto Western Hospital.
Should you have any questions, please do not hesitate to contact Dr. Sheila Mansouri PhD (Staff Scientist) at:
sheila.mansouri@uhnresearch.ca.
The purpose of this study is to understand cancer patient experiences using virtual care during the COVID-19 pandemic, and to develop recommendations that will help to ensure adoption and adaptation of equitable, equal, consistent, and comprehensive virtual care best practices across Canada.
Who is Eligible:
To achieve the objectives of this project, we will conduct one-on-one interviews with cancer patients who have used virtual care during the COVID-19 pandemic as part of their cancer care.
These interviews are offered in both English and French, for which an honourarium will be provided.
Should you have any questions, please do not hesitate to contact us at:
CaringVirtually@protonmail.com
Do you worry about your loved one’s cancer coming back? Do you worry weeks before your loved one’s follow-up appointments? Do your worries about your loved one’s cancer coming back cause you distress or affect your daily life?
If so, a brief online group study is being offered to address these worries.
Who can participate?
Women, living in Canada, who currently provide unpaid support to a loved one:
For more information on how to participate, please contact Jani Lamarche, research coordinator, at:
613-562-5800, ext. 4903
Or email: jlama023@uottawa.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.
Who can participate?
We are seeking individuals who:
To sign-up for the study, visit: https://mystudies.ca/studies/caregiver
After you sign-up, you will receive a brief phone call from a member of our research team to confirm your interest in participating and answer any questions you may have. Once this call is complete, you will receive a link to your online survey.
For more information, questions or concerns, please contact us toll-free at:
1-877-341-8309 (ext. 8 or 9)
Or email: caringforward@iwk.nshealth.ca
Researchers at St. Michael’s Hospital, in Toronto, invite you to participate in a survey on what patients value in their neurosurgeon and on patient involvement in evaluating neurosurgical resident doctors. Incorporating your input into neurosurgical residency training is essential to develop well-rounded neurosurgeons who more effectively meet patient needs and expectations, and we are grateful for your consideration!
Who can participate?
If you are either a neurosurgical patient or a family member, acting as an informal caregiver of a neurosurgical patient, who has had a minimum of one clinical encounter with a staff neurosurgeon, and are 18 years of age or older, you are eligible to participate!
If you are interested in participating in the study, you can complete the survey at the following link: https://www.surveymonkey.com/r/PatientPerspective2021
This survey should take 15-30 minutes to complete.
If you have any questions, please feel free to email us at: Luke.Bannon@unityhealth.to
What is the study about?
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.
Who can participate?
Anyone who is currently/or has ever been diagnosed with a pituitary tumor.
Where can you take the survey?
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
What is the goal of the study?
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.
Who can enter the study?
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:
Please use one of the methods below for more information about the study.
email the study at glioma@yale.edu
Learn more about Dr. Elizabeth B. Claus
If you are interested in learning more about this Registry, please see a recording of a webinar held in July 2019 or read this article from The International Brain Tumour Alliance.