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Studies and Surveys

Your experience matters. Help researchers across Canada shape the direction of brain tumour treatment by taking part in studies and surveys.

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.

  • Understanding Cancer Survivorship: Insights and Experiences for Improved Post-Treatment Care

    We are seeking cancer survivors who are not currently in treatment to share their experiences for a research study aimed at understanding survivorship care. Interviews will be conducted online via Zoom and will take about 30 minutes. Your insights and experiences are incredibly valuable. If you are interested in participating, please reach out to me via email at meghna.katyal@duke.edu. Your contribution will greatly enhance our understanding and improvement of survivorship care.

    Any cancer survivor not currently undergoing treatment is eligible to participate.

    For more information – meghna.katyal@duke.edu

  • Young Adult Cancer Canada (YACC) RECOVER Study

    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:

    complete study

    Once we confirm your eligibility, you will receive an email with a unique link to complete the survey.

    For more information – research@youngadultcancer.ca

  • Developing the Patient-reported Genetic testing Utility InDEx (P-GUIDE)

    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

  • Sensitivity and specificity: Identification of an optimal cognitive screening measure in pediatric oncology

    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 Bethany Lerman – bethany.lerman@sickkids.ca

  • Metastatic Cancer - Virtue Research

    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 cheque 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. 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: Non-Mutated, Non-small Cell Lung Cancer, Gastric / Gastroesophageal Cancer, Esophageal Cancer, Renal Cell Carcinoma, Met Metastatic Cancer Survey Interest Form.

    For more information or questions- Shreya Prakash, 425-436-8688, shreya@endbraincancer.org

  • Understanding Decisional Needs of Patients with Glioblastoma: Supporting Palliative Shared Decision-Making

    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. Participants must meet the following inclusion criteria: Be a patient who was diagnosed with GBM by a healthcare provider in Ontario (OR), be a care partner to a GBM patient (alive or deceased), and be able to complete a 60-minute interview in French or English. Individuals who are not able to provide consent or deemed to have low decisional capacity will be excluded.

    For more information, please email sruller@ohri.ca

  • Evaluating the hypoxic tumour microenvironment of glioblastomas

    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. Eligible patients are those aged 18 and above with primary or recurrent glioblastoma diagnoses undergoing surgical resection at the Toronto Western Hospital.

    Any questions, contact Dr. Sheila Mansouri at: sheila.mansouri@uhnresearch.ca

  • Caring Forward - Caregiver survey

    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

  • Study on visual symptoms of patients with pituitary tumours seeks survey participants

    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

  • International Low Grade Glioma Registry

    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