Women's College Research Institute

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Study: Creation of an online resource for BRCA1/2 mutation carriers on risk management – a needs-assessment

Background

With the availability of information through the media and internet about genetic testing and hereditary syndromes, many BRCA mutation carriers are turning to the web to obtain information about their cancer risks, prevention and treatment options as well as to seek peer-support.

The end goal: evidence-based, personalized web resource

There is a timely need to create a Canadian web-based resource that compiles a comprehensive, evidence-based information portal; few resources currently exists in Canada. This will provide BRCA mutation carriers and their healthcare providers with specific knowledge and skills necessary to make informed decisions about managing their cancer risks, treatment and prevention options such as through surgery or lifestyle or dietary changes.

A needs-assessment to create the web-based resource

We understand that carrying a mutation can be confusing and difficult, especially if questions and concerns are not being answered. The first step in creation of this web-resource is to conduct a needs-assessment to ask BRCA mutation carriers and their healthcare providers about what information is currently lacking and what types of resources they would want to see made available to facilitate understanding of cancer risk, prevention and treatment options.

Who is eligible?

1. BRCA1 and/or BRCA2 mutation carrier women living in Canada, ages 18 or older.
Short 15-30 minute anonymous online survey: http://fluidsurveys.com/s/wchcarrierneeds/

OR

2. Any care providers involved in the care of BRCA1/2 mutation carriers living in Canada. This includes but is not limited to general practitioners, genetic counsellors, oncologists, breast cancer researchers.
Short 5-10 minute online survey: http://fluidsurveys.com/s/wchcareproviderneeds/

Your participation is invaluable in the creation of a resource that meets the needs and concerns of women like yourself or your patients. Consent, confidentiality and privacy policies of your survey responses are addressed at the beginning of the survey.

How do I learn more?

If you have further questions, comments or concerns, please contact our study coordinator Pamela Ng (pamela.ng@wchospital.ca) or lead study investigator Dr. Joanne Kotsopoulos (joanne.kotsopoulos@wchospital.ca or 416-351-3732 ext 2126). 

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  • University of Toronto
  • A member of:
  • Council of Academic Hospitals of Ontario (CAHO)