Thank you for showing an interest in the DIRECT NETs study. This page contains a more detailed description of the study, and an online consent form.
Here is what you can expect to see and do as you proceed through the survey websites.
- The study consists of a ‘choice survey’, and a background information survey.
- The choice survey involve making a series of choices between two potential treatments based on your own preferences.
- At the top of the choice survey page, there is a description of a scenario that a person with a neuroendocrine cancer might find themselves in. This may or may not match your personal experience. Please try to picture yourself in the scenario described.
- At the bottom of the page there will be descriptions of two different treatments, which have different characteristics. Please click on which treatment you would prefer. An example of what this will look like is shown below:
- You will then be presented with a series of similar choices to make.
- The choice surveys are hosted on a website called 1000minds.com, so please do not be surprised when your browser is redirected to a new site.
- At the end of the choice survey you will be redirected to the background information survey, which asks information about you like your age, gender, etc.
If you would like to participate in the DIRECT NETs study, please read the study consent information below. By continuing on from this page you are indicating that you understand the information below and wish to participate.
Please read the information carefully, it will help you decide if you would like to take part. It sets out why we are doing this study and what your participation would involve. Before you decide you may want to talk about the study with other people. Participating in this study is your choice (voluntary), you can choose not to participate or stop the study at any time until completion of the surveys. Clicking the link at the bottom of the page indicates you have read the information on the study and consent to participate. You have the right to choose not to participate, or to stop participating in this study at any time.
You are being invited to take part in this study because you have been diagnosed with a neuroendocrine cancer, are a caregiver for someone with a neuroendocrine cancer, or you are a health care professional involved in the treatment of patients with neuroendocrine cancers.
As neuroendocrine cancers are rare, there is little published information about patient preferences and priorities about options for treatment. In this study, we aim to identify the most important medical treatment characteristics (such as side effects, and how treatments are given) to patients with neuroendocrine cancers. The study uses an online survey tool to present a series of choices between different possible treatments with different characteristics.
WHAT WILL HAPPEN DURING THIS STUDY?
Clicking the link at the bottom of the page will take you to a website that hosts two different choice surveys. During those surveys you will be asked to make a number of choices between two different possible treatments, based on your own preferences. There are no right or wrong answers. After completing those two surveys, you will be asked to complete a background survey with general information about you like your age, the country you live in, information about your experience with neuroendocrine cancers, and about your current health. The surveys are completely anonymous, and at no point will you be asked for any identifying data.
WHAT ARE THE RISKS OR HARMS OF PARTICIPATING IN THIS STUDY?
You may become uncomfortable while completing the surveys, as the topic relates to neuroendocrine cancers and their treatment. You can end the surveys and your participation in the study at any time by closing your internet browser.
WHAT ARE THE BENEFITS OF PARTICIPATING IN THIS STUDY?
You may or may not benefit directly from participating in this study. Your participation may or may not help other people with neuroendocrine cancers in the future. There are no medical benefits to you from taking part in this study. You will not be paid to participate in this study.
HOW WILL MY INFORMATION BE KEPT CONFIDENTIAL?
No information that can identify you, such as your name or contact information, is collected as part of the study. “Study data” is information about you that is collected for the study, but that does not directly identify you. As no identifying data is collected, your study data cannot be linked back to you by the study investigators or anyone else. As your study data cannot be linked back to you, once you have completed the surveys you are unable to request your study data be withdrawn from the study.
Please note that part of the online survey is hosted by ‘Wufoo’, which is a web survey company located in the USA. All responses to the survey will be stored and accessed in the USA. This company is subject to US laws, in particular, to the US FREEDOM Act, which allow authorities access to the records of internet service providers. If you choose to participant in the survey you understand that your responses to the questions and your IP address will be stored and acessed in the USA. However, as no identifiable information is collected, the data stored on Wufoo’s servers cannot be used to identify you. The security and privacy policing for Wufoo can be viewed at: https://help.wufoo.com/articles/en_US/kb/wufoo-gdpr
ARE THERE ANY CONFLICTS OF INTEREST/RELATIONSHIPS?
There are no conflicts of interest to declare related to this study. This study is being funded and run by the Commonwealth Neuroendocrine Tumour research collaborative (CommNETs). CommNETs is a non-profit organization that brings together researchers, health care providers and people with neuroendocrine cancers from Australia, New Zealand and Canada to develop collaborative research studies. While CommNETs is made up of members from these countries, this study is open to people around the world regardless of where they live. The study has been designed without involvement of any members of the pharmaceutical industry.
WHAT ARE THE RIGHTS OF PARTICIPANTS IN A RESEARCH STUDY?
You have the right to receive all information that could help you make a decision about participating in this study. You also have the right to ask questions about this study and your rights as a research participant, and to have them answered to your satisfaction, before you make any decision.
If you have any questions about this study you may contact the person in charge of this study (Principal Investigator) Dr. Simron Singh, Medical Oncology, Simron.firstname.lastname@example.org.
The Sunnybrook Research Ethics Board has reviewed this study. If you have questions about your rights as a research participant or any ethical issues related to this study that you wish to discuss with someone not directly involved with the study, you may call the Chair of the Sunnybrook Research Ethics Board at (416) 480-6100 ext. 88144.