Research Participation Opportunities

Researchers across Canada are investigating a variety of topics important to the brain tumour community. Often this research requires the participation of individuals to help determine if hypothesis' are valid. In this case, researchers recruit members of the public to take part in their projects. On this page you will find links to current research in which you may be interested in participating.

Please note, this is not a list of clinical trials.  

Opportunity to be a member of a Survivor/Family Advisory Committee (SFAC)

We are looking for the following volunteer to be involved in a Survivor/Family Advisory Committee (SFAC) on a Canadian Institute of Health Research (CIHR)-funded cancer survivorship project being led by Dr. Robin Urquhart of the Nova Scotia Health Authority (NSHA)/Dalhousie University:

  • a family member of a brain tumour survivor - who lives in an urban area of Canada 

This project is looking for your input on survivorship needs after cancer treatment!

The SFAC group will meet quarterly for approximately five years to provide input on all aspects of this research project. Each year, three meetings will be held via telephone and one will take place in-person. Travel to that meeting will be supported by the project for committee members.

Potential members are asked to commit for two years, which can be renewed for the maximum duration of the project (approximately five years).

If you are interested in this opportunity, please e-mail robin.urquhart@nshealth.ca by October 31, 2018 and we will provide you with more information.

Warm regards,
Dr. Robin Urquhart
Department of Surgery, Nova Scotia Health Authority/Dalhousie University
 

The Journey for Survivors of Childhood Brain Tumours: From Post-Treatment into Adolescence and Adulthood

Inclusion criteria includes:

  1. Individuals who understand and speak English;
  2. Are ≥ 8 years of age;
  3. Were diagnosed with a brain tumour before the age of 19 years;
  4. Who already completed active treatment for brain tumor and going through the regular follow up.

A purposive sample of 20-30 survivors of childhood brain tumours and their families (up to 2 family members) will be recruited.

Download this PDF poster to find out more.

All.Can patient survey: Improving outcomes for patients, focusing on efficiency

This survey is about trying to find ways to improve patients’ experience of cancer care (note: all forms of cancer). 

We are conducting this research as part of All.Can, an initiative set up to tackle inefficiency in cancer care — where we define ‘inefficient’ as any aspect of cancer care that is not focused on what matters to patients. 

Inefficiency doesn’t just mean wasting money. It includes lost time, cancelled appointments, and unnecessary stress for patients and their families, as well as medical staff. Improving efficiency is a means of focusing resources on what matters to patients. 

The survey is being conducted in 10 countries, including the UK where it is being piloted. By filling in our questionnaire you will be contributing to compelling evidence that will inform our conversations with policymakers with a view to creating meaningful change in cancer care. Our findings will also be published and disseminated at major oncology and patient advocacy conferences, and potentially via other channels.

To learn more, please click here.
 

Mindfulness-based therapy for brain tumour survivors

What is mindfulness-based therapy?
Mindfulness-based therapy is a group-based psychological treatment for coping with illness or disability, with the goal of improving psychological wellbeing. Mindfulness-based therapy participants learn to generate less distress, engage more positively in their lives, and respond to difficult situations more adaptively.

What is the goal of the study?
The purpose of this study is to test the effectiveness of a five session mindfulness-based therapy program in reducing depressive symptoms and perceived stress, as well as improving overall quality of life and wellbeing for BT survivors.

Who is organizing the study?
The study is organized by Dr. Steven Selchen (Psychiatrist, Sunnybrook Health Sciences Centre, Department of Psychiatry) and Ben Diplock (Research Assistant, Sunnybrook Health Sciences Centre).

Who can enter the study?
Anyone between the age of 18 to 69 years old, who:

  • has had past brain tumour-related treatment (one or more of radiation, chemotherapy, surgery)
  • has not been receiving treatment for the past six months or more (any of radiation, chemotherapy, surgery)
  • currently experiencing mild to severe depressive symptoms
  • can attend five sessions (once a week for five weeks) at Sunnybrook Health Sciences Centre in North York
  • has the ability to communicate, in written and spoken English

Please email for more information.

What are study participants asked to do?
The study asks participants to:

  1. attend one intake session to meet Dr. Selchen and learn more about mindfulness and the program
  2. attend five mindfulness-based therapy sessions (once a week for five weeks)
  3. complete a brief self-report questionnaire package on your mental health and wellbeing, three times (at the intake session, at the first therapy session, at the last therapy session)

May I contact the study to get more information?
If interested in learning more about the study and/or participating, please email or call Ben Diplock (study coordinator) at ben.diplock@sunnybrook.ca or (416) 480-6100 x81233.

 

International Low Grade Glioma Registry

What is a low grade glioma?
A non-malignant / low grade glioma (LGG) is a slow growing tumor of the brain.

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 is organizing the study?
The study is organized by Dr. Elizabeth B. Claus (Yale University School of Public Health and Brigham and Women’s Hospital Department of Neurosurgery)

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.

What are study participants asked to do?
The study asks participants to 1) provide a pathology report, 2) complete an online questionnaire and 3) provide a saliva sample that will permit us to look at changes in DNA. If you allow, we will also review your tissue specimens and MRI scans of your LGG. Some participants will be asked to contribute activity data and perform neurocognitive tasks via their smartphone. 

May I contact the study to get 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

Read this article from The International Brain Tumour Alliance.

Note: We are determined that Canada should have it's own Brain Tumour Registry for every type of brain tumour. Find out more about the progress that has been completed so far and how much more still needs to be done until every brain tumour in Canada will be counted with no enrolment necessary.

 

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