Common Questions from Our Participants
What is Alberta’s Tomorrow Project?
Alberta’s Tomorrow Project is a long-term research study established in 2000 to examine the development and prevention of cancer and chronic diseases over several decades.
How long will Alberta’s Tomorrow Project (ATP) last?
The study is scheduled to follow the health of our participants for up to 50 years.
How is Alberta’s Tomorrow Project carrying out its investigation?
We have now enrolled 55,000 men and women in Alberta, between the ages of 35 and 69. Launched in 2000, the study was open to adults with no personal history of malignant cancer.
Participants have been asked to complete questionnaires about their health history, lifestyle habits related to diet and nutrition, medication history, where they’ve lived in the province, and more. Our participants were also invited to provide small samples of urine and blood or saliva and to have physical measurements such as height, weight, and waist circumference taken at a study centre.
Participants have consented to stay with the study for its duration. Their health will be tracked through linkage with health databases such as the Alberta Cancer Registry. We will periodically contact our participants again to obtain updated health and lifestyle information using follow-up surveys, and may ask for new blood or saliva and urine samples. Participants may be asked if they’d be willing to partake in related research, though any future participation in the project or additional research is voluntary.
Why are you tracking participants’ health for up to 50 years?
Cancer and chronic diseases like diabetes and cardiovascular disease can take a long time to develop. By analyzing information provided over a substantial time period, researchers may be able to determine why some people develop certain cancers and chronic diseases and others do not. In addition, it can be difficult to remember what you did 1, 5 or 10 years ago. Longitudinal (long term) data collection from the same people over time helps researchers learn how lifestyle, environmental exposure and genetics contribute to and interact, to increase the risk of these diseases.
Why does ATP stop following participants at the age of 85?
Age 85 was chosen as the end point for participation in Alberta’s Tomorrow Project for a few reasons.
Because ATP is a 50-year undertaking, the youngest participants who join at age 35 will be 85 years old by the end of the study, creating a natural endpoint. In addition, ATP was initially created to investigate why some people get cancer and others do not; the project’s mandate was later broadened to include risk factors for chronic disease. As people approach the age of 85, new cancers tend to be linked to their advancing age, rather than to the lifestyle factors investigated by ATP.
We believe that participants can still provide very worthwhile feedback at and beyond the age of 85. At this time we thank them for their years of involvement, offer an exit survey about their wishes for future contact, and ask if they would like to continue to receive updates about our research and community. In addition, we follow these ATP “graduates” passively by checking their ongoing health status through provincial health registries. Participants have consented to this passive follow-up.
What if I do not develop cancer or a chronic disease – is my information still of use?
The mission of Alberta’s Tomorrow Project is to study factors which increase the risk of developing cancer and chronic diseases like heart disease and diabetes. Information on lifestyle, diet, environmental exposure and genetics will help scientists determine what may cause or help prevent these conditions. Research using data and biological samples from people who stay healthy is just as important as the information about people who develop disease and will provide meaningful answers over time.
Alberta’s Tomorrow Project has reached its recruitment target of 55,000 men and women in the province, and is not taking any new participants right now.
I’m a participant but I’m not sure if my information is up to date. What should I do?
Get in touch with us! You can contact us by calling toll-free 1-877-919-9292. If you’re outside Canada, please call collect to 1-403-955-4617, or send us an email at email@example.com. We will be happy to check your file to make sure we have everything we need.
If I move, can I still participate in the study?
Yes! We want to keep you in Alberta’s Tomorrow Project even if you move to another province, or to another country. To change your name, address or phone numbers please contact us by calling toll-free within Canada at 1-877-919-9292. From outside Canada, please call collect 1-403-955-4617, or email us at firstname.lastname@example.org.
If your file is up to date, we will not need to contact you until our next survey. If you are unsure whether or not your file is up to date, please get in touch with us, via email, mail, or phone. Plans for our next round of questionnaires are underway, tentatively scheduled for 2016-17. In the meantime, we are busy preparing our vast database for analysis by researchers inside Alberta’s Tomorrow Project, and by those associated with research and academic institutions across Alberta and beyond.
Who has access to my personal information?
A limited number of Alberta’s Tomorrow Project staff will have access to your personal information, such as name, phone number and date of enrollment, for the sole purpose of contacting you for additional information or verification, and developing de-identified databases. All ATP staff have signed confidentiality agreements and have completed training on information security and privacy.
What safeguards exist to protect my privacy?
Anything that identifies you, such as your name or Alberta Health Care number, is stored in a separate location from your survey responses, physical measurements, and biological samples. All study information is stored and password-protected on secure and locked computer servers.
All samples are labeled with a barcode and stored in locked facilities. Access to your personal information and biological samples is 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 Alberta’s Tomorrow Project team have access to those files.
Paper surveys are stored in locked cabinets while not in use. After data entry is complete, the paper surveys are recorded using a unique number for archiving purposes. Paper surveys are stored in locked cabinets or restricted access, secure facilities.
Attaching a unique barcode to each participant and their information is part of the de-identification process designed to protect the privacy of participants. Scientists working with any biological samples and/or research data have access only to coded, de-identified information.
What type of information will researchers have access to?
Alberta’s Tomorrow Project is inviting researchers across Alberta and beyond to study the de-identified information and biological samples provided by participants. Their requests must pass strict scientific and ethical review, and will only be approved if the projects also support ATP’s mission of advancing knowledge about the development and prevention of cancer and chronic diseases.
Researchers – whether internal ATP investigators or external scientists – will be given de-identified, coded data only. Researchers will never be given access to any information such as name, date of birth, Alberta Health Care number, or postal code, that could be used to identify a participant.
More information regarding the Access Guidelines and Procedures that researchers must follow to apply for access to ATP data and/or biospecimens can be found here.
Will my employer or insurance company find out my results?
No. Access to de-identified data and biological samples is granted only to scientific researchers who have received approval from an approved research ethics committee, and whose applications for access to the data or biospecimens have been approved by ATP’s independent panel of research experts according to our Access Guidelines and Procedures. ATP never releases information that might identify participants. Under no circumstances will employers or insurance companies be given access to any of your information or biological samples.
Why do you require my Alberta Health Care number?
Your Alberta Health Care number allows us to coordinate the information you have given us with various electronic databases such as those compiled by Alberta Health, the Alberta Cancer Registry, and potentially other cancer and 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 committee. Any data used for analysis will be de-identified to protect your privacy. We will never have access to any chart maintained by your family doctor or other caregiver.
Why are names and phone numbers for two contacts outside my household requested?
Alberta’s Tomorrow Project will continue for the next several decades. One of the known challenges for any longitudinal study is keeping in touch with participants. We need to keep our files as current as possible. If we receive mail returned from your address, we will first try to reach you via telephone directories and address change databases. If we are unsuccessful, we will call your designated contact person to request you contact us with your new address. Providing alternate contact names and numbers is optional.
What happens to my information if I die?
The information and samples that you provide will still be very valuable. We will continue to use them for research purposes in the future.
Where will my data and biological samples be stored?
All data and information will be kept on secure servers behind the firewall of Alberta Health Services-CancerControl, housed in AHS secure server rooms.
The same coding and security measures that are in place for your data also apply to your biological samples. In the future, a portion of the de-identified samples could be transferred to a national biorepository or to another province for storage. If so, these facilities must comply with strict security and ethics protocols.
Participants who consented to participate in the national Canadian Partnership for Tomorrow Project (CPTP) will have a portion of their de-identified data moved to a central secure server. No identifying information will leave Alberta.
We may also send biological samples to other locations within Canada, or outside the country for analysis. If so, these institutions must comply with the same strict security and ethics protocols. All transfers of samples within and outside the province of Alberta will be undertaken following the best practices for security available at the time of transfer.
What steps are taken to ensure that the study is carried out ethically?
Alberta’s Tomorrow Project undergoes yearly review by the Health Research Ethics Board of Alberta (HREBA) – Cancer Committee. HREBA reviews and advises on all research and ethical aspects of ATP, and must be kept informed of any changes to protocol that occur during the lifetime of the project. Furthermore, any research that is undertaken using ATP data and/or samples must have received ethics approval from an approved research ethics board.
Alberta’s Tomorrow Project is a long-term research study. Findings related to the causes and prevention of cancer and chronic diseases will unfold over the next several years. As they are published, summaries of research papers will be posted here. Descriptions of research studies that have been approved can be found here.
How is Alberta’s Tomorrow Project funded?
Alberta’s Tomorrow Project is funded by Alberta Health and the Alberta Cancer Prevention Legacy Fund, the Alberta Cancer Foundation, and the Canadian Partnership Against Cancer, and is based in CancerControl Alberta at Alberta Health Services.
How can I support the project financially?
Alberta’s Tomorrow Project does not raise funds directly. However, the Alberta Cancer Foundation (ACF) is one of our primary funders and relies on the support of many donors. Please visit their website for more information on how you can contribute.
Any additional questions you may have?
Please connect with us. We’re happy to talk to you!