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CCI (formerly ICCCPO) works to build a world-wide community of childhood cancer organizations representing families of children with cancer and childhood cancer survivor groups. We share information and experience in order to improve access to the best possible treatment and care for children with cancer everywhere in the world. Complete the form to learn more.

Research Study: Brain Tumour Preferences

ICCCPO supports a research study that could be of interest to you as a ICCCPO member and/or parent of a child with a brain tumour.

Here you find more information about the study. Please pass this information on to any parents of a child who has or had a brin tumour as well and offer these parents the choice of participating as indicated in the letter of invitation or not.

Download Invitation letter

 

RESEARCH STUDY
BRAIN TUMOUR PREFERENCES: Discrete Choice Experiment
Parent Letter of Information – Phase II

Dear Parent,

You are being invited to participate in this study because you have a child who was diagnosed with a brain tumour. This study is being conducted by clinicians located at the BC Children’s Hospital; the Collaboration for Outcomes Research and Evaluation (CORE), University of British Columbia (UBC) and the Hospital for Sick Children in conjunction with the University of Toronto.

Accumulating data in genetic research are suggesting that pediatric patients with certain subtype of brain tumours have a better prognosis than other subtypes of brain tumour patients, and that they might therefore be ‘over treated’ with current protocols. In Canada and abroad, very little has been done to ask parents of children with brain tumours for their opinions and preferences when it comes to determine to what extent they would accept a higher risk of tumour recurrence in exchange for an improved quality of life for the patient. The purpose of this study is to investigate, by way of an on-line survey, clinicians and parents’ preferences regarding treatment intensity, chance of survival, psychological as well as the economic costs associated with survival from the treatment of a childhood brain tumour.

If you decide to take part in this study, you will be invited to complete a 30 minute on-line questionnaire where you will be asked your thoughts on the current issues surrounding the approach to the management of a child with a diagnosed brain tumour. Demographic information such as your age, gender, ethnicity, education, socioeconomic status will also be collected. Your participation in the study is entirely voluntary and you can withdraw at any time. No information that discloses your identity will be released or published.

The information obtained from the completion of this questionnaire will help to increase researchers’ understanding of the perceptions parents, who have gone through the experience of having a child treated for a brain tumour, have. This study may influence future clinical trials and treatment protocols.
Should you have questions, please call the study coordinator at 604-827-1567.

If you are interested to participate, please follow this link:
LINK: https://secure.cheos.ubc.ca/amir/MagicPar/register.php
Invitation Code: M6irpx5w

You will be asked to create a unique username and password when accessing the survey.

Sincerely,
Dr. Carlo Marra,
Principal Investigator

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