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.  

Clinical Trials Ontario: Call for Members for the Patient and Public Advisory Group - February 2019

Clinical Trials Ontario (CTO) is an independent not-for-profit organization established with support from the Government of Ontario. Our mandate is to work together with the clinical trials community, the public, and other partners to improve Ontario’s clinical trials environment. Since 2012 we have been carrying out our mandate with one of our three strategic pillars being patient and public engagement.

We believe engaging patients and the public is critical to improving the environment for clinical trials in Ontario and will result in better clinical trials, better experiences for trial participants, better physicianresearcher experiences, and in the long run, a better health care system. More information about Clinical Trials Ontario can be found at www.ctontario.ca.

In 2017, CTO created a Patient and Public Advisory Group (which we call the P2AG). More information about the P2AG, its goals and its members can be found here. The P2AG helps CTO ensure that our activities are informed and improved by the perspectives and advice of patients and the public.

We are currently seeking 3-4 new members to join the current P2AG members. You do not need to know about clinical trials to be involved – as long as you are interested in clinical trials and live in Ontario there may be a role for you.

To be part of the P2AG, we would ask that you:

  • Be prepared for and attend approximately quarterly meetings in person (noting that CTO will arrange and pay for any transportation and accommodation for you). You may also be provided the option to attend CTO’s annual conference;
  • Openly and constructively participate in discussions, provide feedback, raise issues, and solve problems collaboratively;
  • Participate in training about the research process and clinical trials;
  • Foster and contribute to an open, collaborative climate, independent of your own personal interests;
  • Support the mandate of Clinical Trials Ontario;
  • Provide constructive feedback as well as criticism;
  • Draw on knowledge, personal and professional networks, and experience to provide input into discussions and decisions;
  • Act as a champion for further patient and public engagement.

You will be provided with an honorarium for your participation (if you wish) and have your expenses covered to attend any in-person P2AG meetings.

If you are interested in this, please email Dawn Richards, CTO’s Director of Patient and Public Engagement (dawn.richards@ctontario.ca), with some information about yourself including:

  • Why you are interested in being part of the P2AG;
  • The contribution you could make to the P2AG (skills, experience, or perspectives);
  • Any involvement you have with patient or healthcare organizations (note that this is not a requirement to participate);
  • Where you live;
  • Any other community affiliation that you wish to share (e.g., a particular ethno-cultural community, LGBTQ, youth)
  • If you would be interested in remaining connected to CTO even if you are not invited to participate in the P2AG (your name and email address will be placed on a mailing list). We would like to build a community of people like you who are interested in clinical trials and to provide you with information about this topic. We may provide you with information on educational opportunities and sites, interesting research, and other potential opportunities to be involved in research as a collaborator with some of our partners.

If you are interested, we ask that you please respond by March 15, 2019. Thank you in advance for your interest in participating. If you have any questions about this opportunity, please contact Dawn Richards (dawn.richards@ctontario.ca).

See this information as a PDF.

 

Seeking participants for a survey on peer support in cancer

Cancer can be isolatingPrincess Margaret Cancer Centre is conducting a study with Adolescents and Young Adults (AYA) in Canada with cancer to understand their needs and preferences for peer support and interest in using a digital app to connect with peer cancer survivors.

If you were diagnosed with cancer between 15 and 39 years of age, please complete the following online 25 minute survey for a chance to win a $100 VISA Gift Card! http://bit.do/Connect4Health

By participating in this study, you will be contributing to the design of a peer support program specifically for AYA diagnosed with cancer.

Should you have any questions, please contact Dr. Jackie Bender, PhD., Principal Investigator for the study at Jackie.Bender@uhnresearch.ca.

Download a one page PDF on this survey.

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.

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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