Survey Consent Landing Page

Title of Research Project:
Are there inequities in access to care and quality of life amongst certain groups of patients with inherited bleeding disorders?

Investigators:
Dr. Sumedha Arya, MD1
Pamela Wilton RN, CRE2
David Page2
Dr. Katie Dainty, PhD3
Dr. Rochelle Winikoff, MDCM, FRCP, MSc4
Dr. Michelle Sholzberg, MDCM, MSc, FRCPC3,5

1 Department of Medicine, University of Toronto, Toronto, Canada.
2 Canadian Hemophilia Society, Montreal, Quebec, Canada.
3 Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Canada.
4 Division of Hematology-Oncology, CHU Ste-Justine, Montreal, Canada.
5 Department of Medicine and Laboratory Medicine & Pathobiology, St. Michael's Hospital, Toronto, Canada.

Study description: As far as we know, no study has looked at whether there are differences in access to health care for patients with inherited bleeding disorders. This survey of Canadian men and women with inherited bleeding disorders will determine if some patients have delayed access to medical care and possibly more problems related to bleeding. We are interested in learning more about your experiences. You will be asked questions about your symptoms, your diagnosis, and your access to medical care. The entire survey should take less than 15 minutes to complete. You may skip any questions you do not wish to answer.

Confidentiality: Participation in this study is completely voluntary, anonymous and confidential. We do not record your name, IP address, or any other identifying data. Please note that the online survey is hosted by the American company SurveyMonkey. SurveyMonkey currently stores survey data in the United States and may be subject to U.S. laws, such as the USA PATRIOT Act, which allows authorities to access the records of internet service providers. If you choose to participate in this survey, you understand that your responses to the survey questions and your IP address may be accessed outside of Canada. The security and privacy policy for SurveyMonkey can be found at the following link: https://www.surveymonkey.com/mp/policy/privacy-policy/

Potential Benefits to you: There is no expected direct benefit to you by participating in this survey. However, your future access to health care, and that of others, may be based on the findings of this study. The information that is collected from you will be used to help doctors identify possible differences in health care access among some patient groups and help identify the reasons for this so that efforts can be made to overcome these issues. Given that this is anonymous, we are unable to provide results to participants directly. However, combined results will be available for interested participants after study analysis.

Potential Harms: We know of no direct physical harm that could take place to you in this study. Your participation in this study could however bring up strong emotional feelings about your bleeding symptoms, especially if you feel that you have experienced difficulties accessing medical care. If this should be the case, you may quit the survey any time. This survey is completely anonymous, so your decision to take part will not affect your medical care in any way.

Consent: By answering the survey questions, you are consenting to participate in the study. Your participation in this study is entirely voluntary, and you can exit the survey at any time. Please note that, as this survey is anonymous, once the questionnaire is submitted, you cannot withdraw. 
If you have any questions regarding your rights as a research participant, you may contact the Providence St. Joseph’s and St. Michael’s Healthcare Research Ethics Board at 416-864-6060 ext. 2557 during business hours (9:00am to 5:00pm). You may also contact the study investigators at any time at sumedha.arya@mail.utoronto.ca and sholzbergm@smh.ca. Please print a copy of this consent for your records.

Please click "Next" to continue if you choose to participate in this study.

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