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Help Wanted

Experience matters. Help researchers across Canada shape the direction of brain tumour treatment by taking part in studies.

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.

Seeking Patient and Caregiver Feedback on the Experience and Treatment Pathway of Oligodendroglioma and Astrocytoma Diagnoses

Brain Tumor Foundation of Canada is working with MPI Research, a Canadian-based marketing research company, to inform the brain tumour community of a study that looks to provide an accurate description of the IDH-mutant diffuse glioma patient pathway from the patient’s and caregiver’s perspectives, including the impact of the diagnosis, the challenges to accessing care, the emotional burden, the consequences on day-to-day quality of life and on family and expectations. It is hoped that this study will help to identify shortcomings throughout the patient journey, and will help to improve the care for individuals with this type of glioma.

Who can participate?

Patients over the age of 12 with diffuse IDHm glioma (low-grade oligodendroglioma or astrocytoma), having undergone resection at least 6 months ago, and caregivers of those diagnosed with a diffuse IDHm glioma.

How to participate?

Using the link below, schedule a brief phone call with Christine Hanley from MPI Research to ensure your suitability for this study:

https://calendly.com/chanley-mpi/diffuse-glioma-study-pre-registration

For more information on how to participate,
You can reach Christine Hanley with MPI Research at (514) 819-9718 or via email at christine.hanley@mpiresearch.ca.

For more information on the details of this study and your participation, please see here.

Seeking Self-Employed Canadians Touched by Cancer

We are actively seeking self-employed Canadians touched by cancer to take part in our survey to assess cancer’s impact on their financial, business, and professional well-being. This survey follows the descriptive study by Cancer and Work (www.cancerandwork.ca), where they interviewed 23 self-employed Canadians on the impact cancer has on their self, their work and their business.

Who can participate

Must be 18 and older and self-employed at the time of cancer diagnosis less than 5 years ago.

How to participate

Fill out this survey.

For more information on how to participate,
please email Master of nursing student camilo.sierra@mail.mcgill.ca or Principal researcher Dr. Christine, RN, PhD, associate professor, Ingram School of Nursing, McGill University at christine.maheu@mcgill.ca

Exploring the experience of transition to palliative care of young adults living with metastatic/advanced cancer

Are you a Canadian young adult (18-39 years of age) living with metastatic/advanced cancer? Have you talked to a healthcare provider about palliative and end-of-life care services? We are looking for young adults living with metastatic/advanced cancer to take part in a research interview.

Who can participate

Canadian young adults (18-39 years of age) living with metastatic/advanced cancer who have talked to a healthcare provider about palliative and end-of-life care services.

How to participate

Take part in a research interview

For more information on how to participate, please email
Emily.Drake@dal.ca

Cancer’s impact on the financial, business, and professional well-being of self-employed Canadians

We are actively seeking self-employed Canadians touched by cancer to take part in our survey to assess cancer’s impact on their financial, business, and professional well-being.

This survey follows the descriptive study by Cancer and Work, where they interviewed 23 self-employed Canadians on the impact cancer has on their self, their work and their business.

Who can participate

  • Age 18 or older
  • Currently self-employed or were self-employed at the time of diagnosis
  • Diagnosed with cancer within the past 5 years
  • Fluent in English or French

How to participate

To begin the Cancer and Work survey on financial, business, and professional well-being of the self-employed Canadians, click on this link: Cancer and Financial Impact Survey Link.

For more information, who to contact:

Contact research team: Master nursing student Camilo Sierra or Principal researcher Dr. Christine Maheu, RN, PhD, associate professor, Ingram School of Nursing, McGill University

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 YAs with cancer feel are most important.

Who can participate

People living in Canada who are over the age of 18 and were diagnosed with any type of cancer before the age of 40.

How to participate

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 fill out the form located here.

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

For more information on how to participate, please email
research@youngadultcancer.ca

Priority Setting Partnership to help advance YA Cancer Research

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

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.

Who can participate

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

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

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)

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

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 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:

  • 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, please call or email Shreya Prakash, 425-436-8688 , at:
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.

Who can participate?

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 on how to participate, please email Alixe Ménard, project lead, at:
alimenard@ohri.ca

Glioblastoma Call for Statement of Interest

 
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.

Understanding the association between physical activity, body image, and quality of life for young adult males living with and beyond cancer

 
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.

Living with Cancer During COVID-19

 
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.

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.

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.

Caring Virtually: A Virtual Care Oncology Patient Study – Request for Assistance in Patient Recruitment

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

Managing your Family Caregiver Worries: A Research Study

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:

  • who is 18 years of age or older
  • who has recently been diagnosed with cancer and has finished their treatment
  • who has not experienced a cancer recurrence
  • and worry about cancer for themselves or their loved ones
  • and are interested in exploring their fear of cancer recurrence
  • and are willing to participate in seven weekly small online group meetings
  • and are willing to answer questionnaire packages at various points in time

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 – 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.

Who can participate?
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
  • Are fluent in English

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

Study Seeks Patients’ Perspectives on Neurosurgical Resident Doctor Training Program

 

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

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

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

International Low Grade Glioma Registry

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.