Voicing My CHOiCES (VMC) is an advanced care planning tool that was created to help guide conversations about end-of-life (EoL) care for young people and has been shown to improve their experiences. However, there are unique aspects to the Canadian health-care system that are not covered in the current VMC tool, and so a Canadian version is needed. This study will assess how appropriate and helpful VMC is for Canadian adolescents and young adults (AYAs) and identify any changes needed to make it more relevant. This research is the first step in a larger program of research to focus on improving care for young people with advanced cancer in Canada.

Who is eligible to participate?

Eligible participants are individuals currently aged 15 to 39 who were diagnosed with cancer between those ages, reside in Canada, and self-identify as living with metastatic or advanced cancer. In the brain tumour community, this refers to individuals who do not anticipate a surgical cure. Participants must be at least six months post-diagnosis and able to read and understand English.

If you are interested, please email thrivelab@ucalgary.ca

This study explores the experiences of Canadians who have had to leave their hometown or city for cancer treatment, whether for a day trip or an extended stay, and the ripple effects this has on their lives and families.

Who is eligible to participate?

This is part of a broader initiative supported by the Leukemia & Lymphoma Society of Canada (LLSC), and in this phase, we’re focusing on people (age 18+) affected by any type of cancer other than blood cancers, as well as their caregivers.

If you are interested, please email Colleen.McMillan@lls.org

Researchers at BC Children’s Hospital are working to better understand how proton radiation therapy affects the everyday lives of children and families. This study aims to explore quality of life, access to care, and peer experiences following treatment—with the goal of helping healthcare teams better support families like yours.

Who is eligible to participate?

Parents or caregivers of a child who received proton radiation therapy before the age of 18 are eligible to participate. Depending on the child’s current age, children may also be invited to take part by completing age-appropriate surveys.

If you are interested, please email protonstudy@cw.bc.ca

We are looking for patients who have been diagnosed with cancer or those involved in providing decision support for cancer patients to participate in this study exploring the use of generative artificial intelligence (AI), such as conversational chatbots, to assist patients in understanding their clinical trial options.

Participation involves a 1.5-hour virtual session where you will provide feedback on your interaction with an AI generated clinical trial match summary and a conversational AI chatbot. No prior AI experience is needed. You can also invite a support person to join the study. Both of you will be interviewed separately.

If you are interested, please contact Natalie Yeh at natalie.yeh@uhn.ca

We are UBC researchers studying how cancer patients feel about the use of artificial intelligence (AI) in their care, especially when it comes to predicting life expectancy. Through one-on-one interviews, either in-person or virtually, we hope to learn about patients’ thoughts, expectations, comfort levels, and any concerns they may have about using AI in medical decisions. By gathering the experiences of people receiving cancer care, we aim to better understand how patients view these new technologies. Our findings will help improve patient education, support clear communication, and guide the use of AI tools to benefit patient care and outcomes.

Who is eligible to participate?

To participate in this study, you much be a patient with a cancer diagnosis (of any stage and any type), be 18 years or older, have the capacity to make decisions, and reside in British Columbia.

For more information please contact Anita Ho, PhD, MPH (Principal Investigator) at anita.ho@ubc.ca or Nikolay Alabi, BS (Co-Investigator) at nalabi60@student.ubc.ca

Researchers from the University of New Brunswick and the IWK Health are currently recruiting parents and caregivers across Canada to participate in a study, regardless of whether they use social media support groups or not. The purpose of the study is to better understand the connection between mental health and the use of social media support groups for families affected by childhood cancer.

Participate

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 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

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