The Tomorrow Project

	>The Tomorrow Project Will you lend a hand?

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NOTE:The Tomorrow Project has entered into a new phase of our study titled Count Me In 4 Tomorrow. This is a continuation of the original Tomorrow Project which many of you have volunteered to take part in over the years. If you have received either a thank-you letter from the Minister of Health and Wellness or the Count Me In 4 Tomorrow newsletter it means that you are currently a participant in The Tomorrow Project. Currently The Tomorrow Project has been inviting existing participants from Calgary and Edmonton and the surrounding areas to take part in the next phase of the study and within the year the remainder of participants outside of those areas will be sent the invitation package and have the opportunity to take part.

1) About the Study

What is the Canadian Partnership for Tomorrow Project? In 2008, Alberta's Tomorrow Project partnered with similar projects in other parts of Canada to create a very large study that will involve 300,000 people. As part of that total, Alberta's Tomorrow Project has committed to enroll 50,000 people. The pan-Canadian study is called the Canadian Partnership for Tomorrow Project, and is one of the largest studies of its kind in the world. Our partners in the Canadian study are in Ontario, Quebec, the Atlantic provinces and British Columbia. Other provinces are likely to join as the project moves forward.

How is The Tomorrow Project carrying out its investigation? We are recruiting 50,000 men and women between the ages of 35 and 69 in the province of Alberta. Participants are asked questions about lifestyle, health and diet. They are invited to provide small samples of urine, blood or saliva and to have various physical measurements taken. Participants' health will be followed for 50 years through cancer registries, hospitalization records and various other health records. We may re-contact participants at regular intervals to invite them to complete follow-up surveys, or to invite them to take part in new research studies. Follow-up or new surveys may involve invitations to provide additional biological samples. Participation in any follow-up or new research is completely optional.

Why are you going to track participants' health for such a long time? Cancer takes a long time to develop. By analyzing the samples and other information over a long period, researchers may be able to determine why some people develop particular cancers, while others do not. This will help researchers understand how our environment, genetic make-up, and lifestyle contribute to the risk of cancer.

When will results of your research be made public? The Tomorrow Project is a long-term research study. Many results relating to the causes, control and prevention of cancer will not be known for many years. Summaries of findings from research studies will be published and available on this website from time to time.

How is this very large cohort study being funded (by whom and at what cost)? The Canadian Partnership Against Cancer is funding the pan-Canadian cohort. They will provide $42.1 million over 4 years, distributed between British Columbia, Alberta, Ontario, Quebec and the Atlantic provinces. The Alberta portion of this funding is approximately $7 million. In addition, each province must secure additional funding from other sources. In Alberta, the Tomorrow Project is funded by the Alberta Cancer Prevention Legacy Fund, and by donations given to the Alberta Cancer Foundation.

How can I support the Tomorrow Project financially? The Tomorrow Project does not raise its own funds. If you wish to support the work of the Alberta Cancer Foundation, please visit their website.

How will the Tomorrow Project contribute to the study of rare cancers? In order to examine the causes of rarer cancers, there is a need to recruit hundreds of thousands of people who are willing to be followed over a long period of time. That is the rationale for Alberta joining the pan-Canadian cohort which will enroll about 300,000 participants. In addition, we have joined the Public Population Project in Genomics (P3G) which aims to promote collaboration between researchers around the world who are developing similar very large studies. Such collaboration and harmonization of effort will result in the construction of de-identified datasets that are large enough to answer questions about many different kinds of cancers, and potentially other long-term health conditions.

Who can participate? People who can join the study are Albertans between the ages of 35 and 69, who have never been diagnosed with cancer. If you think you may be interested in participating, please complete the Join the Study – registration form on the website or phone our toll free telephone line: 1-877-919-9292.

What do participants have to do? The Tomorrow Project participants are invited to:
Complete questionnaires about various aspects of health and lifestyle. Visit a Tomorrow Project Study Centre to have some measurements taken and to donate small amounts of blood (or saliva) and urine. Agree to be contacted every few years to provide more information about health and lifestyle, or to donate additional samples. Give permission for approved researchers to access health related records that might be kept by the provincial health ministry or other agencies.

The goal of the study is to follow participants over their lives until age 85, although people can, of course, drop out of the study at any time.

2)Participating

3)Privacy/Confidentiality

Will there be any commercialization? Your data and samples will be used only for research, and will not be sold.

Who will have access to my personal information and samples? A limited number of Tomorrow Project staff will have access to your personal information and samples. This will be strictly for the purposes of developing databases, contacting you for additional environmental, diet and health information, and assessing the effectiveness of the study. All Tomorrow Project Staff have signed oaths of confidentiality, and completed training about information security and privacy.

What steps have been taken to ensure that the study is performed ethically? The Tomorrow Project undergoes yearly review by the Alberta Cancer Research Ethics Committee. The Research Ethics Committee has the authority to approve all aspects of a research study. Rigorous standards are maintained to keep all information strictly confidential.

What type of data will External Researchers have access to? The Tomorrow Project expects to receive requests from external researchers from all over the world to study some of the information and samples that participants provide. These requests must pass a strict scientific and ethical review and receive approval before any data or samples would be shared.

The data provided by individual participants will only be disclosed to external researchers once any information that directly identifies you has been removed. If international researchers also have access to the data you've collected, how do you ensure that similar ethical guidelines are adhered to? In terms if international researchers, they must receive ethical approval from their own organization prior to obtaining any Tomorrow Project data or samples. Any proposals will also be reviewed by an expert panel to decide whether or not they are reasonable and valuable projects. No researchers will be given any identifiable participant information, which we consider to be date of birth, health care number and postal code. Names, addresses, phone numbers, etc. are never stored with your other data and no researchers have access to this information, including the Tomorrow Project researchers in Alberta. Tomorrow Project has extensive agreements and memorandums of understanding that must be signed by external researchers. In addition, the ethics and legal team from the Canadian Partnership for Tomorrow Project is working to develop similar guidelines and contracts for the pan-Canadian data.

Where will my samples and information be stored? Initially, all data and information will be kept on secure servers behind the firewall of Alberta Health Services – Cancer Care, housed in Calgary, Alberta. Initially, the biological samples will be stored in Alberta in a secure facility at the Holy Cross site in Calgary. The same coding and security measures that are in place for your data also will apply to your samples. In the future, however, a portion of the samples could be transferred to a national biorepository or to another province for storage. If so, these locations must comply with strict security and ethics protocols. In addition, we may send biological samples to other locations within Canada, or outside Canada, for analysis. If so, those locations must comply with strict security and ethics protocols. All transfers of samples within and outside the province of Alberta will be undertaken using the best practices for security available at the time of transfer.

How will my personal health information and samples be protected? Anything that identifies you, such as your name or health card number, will be stored in a separate location from your questionnaire responses, physical measures, and samples. All study information will be stored on secure and locked computer servers. These computers are password protected. All samples will be labelled with a barcode and stored in locked facilities. Access to your information and samples will be limited and monitored closely. Files that link your personal information to barcodes are stored in a secured area, and only a few members of The Tomorrow Project team have access to those files. Those working with the samples and other research data only have access to coded information, not any identifying information about participants. Paper surveys are stored in locked cabinets while not in use. After data entry is complete, the paper surveys are no longer identified by name, just a meaningless but unique number. Paper surveys are stored in locked cabinets or secure access restricted facilities.

Will my insurance company or my employer find out my results? No, they will not. We separate your address and other personal information from your biological samples and other data, which are identified only by a numeric code. This data is anonymous. Even then, access to this anonymous data is only granted to scientific researchers who have received approval from the appropriate Research Ethics Board. Employers cannot access any information under any circumstances.

Why do you ask for my Alberta Health Care Number? Your Alberta Health Care number allows us to coordinate the information you give us on surveys with various electronic databases such as those compiled by Alberta Health and Wellness, the Alberta Cancer Registry based at Alberta Health Services -Cancer Care, and potentially the federal Vital Statistics database, pharmacy databases, and cancer and other chronic disease screening databases. Linking of information in this way will only be done to answer specific research questions that have been reviewed by an approved research ethics board. Any data used for analysis will be de-identified to protect your privacy. We will never review your chart maintained by your family doctor.

What information are you able to access about me from Alberta Health and Wellness? Access to current and past medical records and other health-related databases will only be requested for specific research purposes. Records will not be accessed unless the research purposes have been approved by the appropriate ethical approval agencies. We may seek to access health care utilization information in the form of physician billing codes. Different services are billed using different codes. Some codes refer to things like a “15 minute visit”, while other codes are more specific for some treatments, or reason for treatment (diagnosis code). We do not have access to any doctor’s notes, charts or narratives and there is no direct data transfer from or to your own doctor’s office.

What happens to my information if I die? The information and samples that you give us will still be valuable. We will continue to use them for research purposes in the future.

How did you get my phone number? We used a Random Digit Dial (RDD) method to find some participants for the Tomorrow Project. This means that a computer randomly generates a large number of telephone numbers and these are used to call people across the province. Most existing participants were contacted by an interviewer from the Population Research Laboratory in the Department of Sociology at the University of Alberta, working on behalf of the Tomorrow Project. If you are interested in more information about the Population Research Laboratory, you may visit their website.

Why are you phoning me when I have signed up for Canada’s National Do Not Call List (DNCL)? Tomorrow Project telephone recruitment is completed by the Population Research Laboratory at the University of Alberta. Similar to other organizations such as registered charities, political parties, riding associations, political candidates, opinion polling firms, market research firms conducting surveys, newspapers, or other callers that are not asking you to purchase, lease or rent a product or service, the University of Alberta is excluded from Canada’s National Do Not Call List.

Why do you need the names and phone numbers of two contacts outside my household? The Tomorrow Project will continue for several decades. During this time it is likely that many people will move. It is known that one of the most important challenges in a long-term study is to keep in touch with the participants to keep up-to-date and complete information. We also know that in the midst of moving it is sometimes difficult to remember to notify everyone of an address change! If we were to receive mail returned from your address, we would first use all available means to locate your new address, such as telephone directories and address change databases. Only then would we call your contact person in order to ask them to pass along a message for you to contact us with your new address. Like all the information we request, providing the names of contact people is optional.

For more information, please visit www.thetomorrowproject.org

4) Study Centre Questions