Welcome

(Please do not do this questionnaire again, if you have completed it before).
Survey Consent

Principal Investigator(s):
Dr. Michael Cusimano, MD, MHPE, FRCSC, PhD, FACS, FCAHS
Professor, Division of Neurosurgery, St. Michael’s Hospital, University of Toronto, Toronto, Ontario, Canada

Co-Investigator(s):
Dr. Alireza Sadeghian, MASc, PhD
Professor, Department of Computer Science, Toronto Metropolitan University, Toronto, Ontario, Canada

We would like to invite you to participate in this study by completing this questionnaire.

The goal of our research is to detect pituitary tumour diseases such as Acromegaly earlier than they are presently detected. These diseases may affect people’s appearances over time such as their facial features, hands, and feet. However, because of the long duration of time it takes to receive a diagnosis, many patients are found in the advanced stage of disease and need many treatments such as surgery, medical therapy, and/or radiation. Therefore, our team is aiming to develop an application using computer-based machine learning to detect the earliest physical changes caused by pituitary tumour diseases such as Acromegaly.

The purpose of this questionnaire is to better understand the user requirements and design features to guide the development of this future application. Your input will help ensure this application will be accessible and user-friendly.

The questionnaire will take approximately 15-20 minutes. If you are unable to complete it at once, you may return to it at another time by accessing the survey link on the same computer/mobile device.

Please feel free to forward the survey to others in your network such as friends, family members, healthcare providers, and other patients with lived experiences.

In appreciation for your participation, you will have the option to participate in a draw to win one of 10 Amazon gift cards, provided in your local currency equivalent to $10 CAD. If you wish to participate, you will be linked to a separate SurveyMonkey where you will be asked to provide your contact information so you can be contacted if you are selected as a winner. You may also provide your contact information in this separate SurveyMonkey should you wish to be informed about any future research studies that may be relevant or of interest to you.

There are minimal risks to you from participating in this study. Participation will not involve any additional costs to you. No personal identifying information is required to complete the questionnaire. Limited identifying information (name, email) can be optionally submitted for the sole purpose of consenting to participate in a draw for a gift card or being informed about future relevant studies, and will remain confidential. Collected data will reside on the SurveyMonkey servers, which adhere to rigorous security standards (ISO27001) including vulnerability management, AES 256-based encryption, and physical security controls (see Privacy and Security policies). Nonetheless, complete immunity from potential privacy breaches cannot be guaranteed. Responses will only be used for research purposes and accessed by authorized research personnel.

This research project was reviewed by Unity Health Toronto Research Ethics Board (REB 25-017).
Confidentiality and Privacy
Please note that data collected using SurveyMonkey resides on the SurveyMonkey servers which are located outside of Canada, and may be subject to privacy laws and legislation which differ from those in Canada (such as the USA PATRIOT Act of 2001, which entitles US government bodies to access information held in the US for governmental security and other purposes).

Participation and Withdrawal
Your participation is completely voluntary. You can end your participation in this survey at any time prior to clicking "DONE." You may choose to leave blank any question that makes you feel uncomfortable. Since this questionnaire does not require any identifying information (meaning your answers would be anonymous and therefore, impossible to withdraw from the study), you will also be provided an opportunity to create a unique survey identifier code. UK/EU participants MUST create a survey identifier code. This code will be used solely for the purpose of allowing you to withdraw your answers to the survey (at any time prior to the publication of the results of this study), and not to link any personal identifiers to your responses.

Thank you for considering to participate. Should you have any questions, feel free to contact our research team at acromegaly-research@smh.ca or 416-864-5312. If you have any questions regarding your rights as a research participant or have any concerns with the study, you may contact the Unity Health Toronto Research Ethics Board Office at 416-864-6060 ext. 2557 on weekdays 9AM- 5PM EST.

By clicking "NEXT" below, I confirm that I have read this form and decided to participate in this study. I acknowledge that I meet the minimum age in my jurisdiction to consent to participating in a survey. I understand that I can discontinue participation at any time.

Thank you,

Dr. Michael Cusimano, MD, MHPE, FRCSC, PhD, FACS, FCAHS
Professor, Division of Neurosurgery, St. Michael’s Hospital, University of Toronto, Toronto, Ontario, Canada
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For individuals in the UK/EU only: In addition to those outlined above, please note that you have additional rights afforded by your privacy legislation. These rights are further discussed in the GDPR notice found here:
https://drive.google.com/file/d/1OhX9Y99sqGzhv-lIri0iHOi4UM8efc1p/view

Question Title

* 1. For individuals in the UK/EU, by selecting "Yes", you acknowledge that you have read the GDPR notice.

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