More than 1,000 people from the St. Albert area have joined the battle against cancer, committing to a study that will span generations.
They are among nearly 50,000 Albertans who have registered for a long-term research project titled the Tomorrow Project, which will look at the causes of cancer and other chronic diseases.
"We do have pockets in the province where we have quite high participation, and St. Albert seems to be one of those. I couldn't tell you why," said Paula Robson, the project's scientific director.
Participants are asked to fill out a questionnaire about things like diet, lifestyle, exercise and environment, as well as provide samples of urine, blood and/or saliva. Over the course of their lives, further data may be collected to try to pin down some of the risk factors associated with these diseases.
Alberta's Tomorrow Project is part of a Canada-wide grouping of similar projects, which aims to enrol as many as 700,000 participants — making this one of the largest studies of its kind anywhere in the world.
Participation
Ann Blandy said she got involved, in part, because there have been cancer deaths in her family and she thought taking part would be a good way to help the cause.
"There's a lot of ways to support cancer financially, but not always a lot of ways for the average citizen to contribute to the fight without having to make a donation," she said.
She added there was a personal benefit, as well, because filling out the questionnaire gave her greater insight into her own health.
For Krista Osborne, getting involved was an easy choice. She watched a family member struggling with and eventually succumbing to lung cancer, and signing up was a way to cope with the feeling of helplessness that comes from watching a loved one suffer.
"I guess for me it really helped to have a focus," she said. "It wasn't going to change the outcome for her, but it certainly helps. The idea is if I can do something to help other people not have to go through this, why shouldn't I?"
Osborne's story is not unique. The most recently available statistics show that one in two men and one in three women will get a cancer diagnosis at some point in their lives, and one in four people will die from it.
The Tomorrow Project began in 2001, and Robson described its incarnation from 2001-2008 a "pencil and paper cohort" of 30,000 Albertans. When funding from the Canadian Partnership Against Cancer came in 2008 to expand the scope of the project, they went back to original participants to collect samples and re-enrol them in the project.
Don Hornsberger registered for the study in that initial incarnation, and opted to get involved in the larger project as well. His motivation is not unlike Osborne's. Both of his parents, and many other family members, died of cancer.
"I thought this study made a lot of sense in terms of trying to get down to the root cause of what might trigger cancer to go out of control in people," he said. "I thought the little bit I could do to help in this study, maybe down the road our kids won't have to deal with this horrible disease."
Project goals
Robson said this is precisely the point of the project. There is a great deal of research going on into finding cures for various cancers and exploring new treatment options, but the Tomorrow Project aims to help reduce the number of diagnoses to begin with.
"Rather than being one study that sets out to collect one set of information with one defined outcome, we are coming around to the idea that there is a lot of information we have here that could be used by researchers to add to this body of knowledge," she said.
There are currently about 16,000 Albertans diagnosed with cancer each year, and because of this province's aging and growing population, that number is projected to increase to 27,000 by 2030. She noted this reflects higher total numbers rather than a higher rate, but the benefit to reducing that number is nonetheless self-evident.
By combining this project with others in Canada and around the world, and trying to harmonize the data to make it uniform across the board, Robson said there is an opportunity to generate a much greater understanding of geographic determinants of cancer. The predominant type of cancer varies from country to country.
Furthermore, being able to bring together these studies and have a larger set of data to work with can help with understanding some of the more rare types of cancer as well because it increases the statistical power of the data.
What happens next?
While much of the useful information from this project will come five, 10 or 20 years down the road as further samples are taken, Robson said there are many things that can be done immediately to add to the body of research that already exists.
"What we can start to do is start to look at the information we've obtained, even to see what the prevalence of risk factors in this group of people is," she said.
Research has already established that smoking cigarettes, for example, is a contributing factor to the development of cancer. With the Tomorrow Project, researchers will be able to say with a great degree of certainty how prevalent smoking is within the population, and it may provide hints about clusters of risk factors or possible intervention strategies.
Another immediate benefit is that blood samples from participants, all of whom have not had a cancer diagnosis, can be compared to blood samples from cancer patients in an attempt to find clues from the differences.
One of the other things that will happen almost immediately is project directors will establish who will have access to the data, and how. Any researchers who want access to the data will have to have ethical approval from a board that is consistent with Canadian standards, and will have to be actively publishing in their field.
Robson said one of the most significant things that will happen in the next year is that project directors will look at how to actively engage participants, and get their feedback on how the data could or should be used, shaping the future direction of the project.
"It hasn't been done very much in studies like this in the past, but we're thinking it's extremely important to be able to give back to people and hear people's voices," she said.
For more information or to register, visit www.in4tomorrow.ca.
