Why one family has participated in more than a dozen research studies

June 15, 2018

Why one family has participated in more than a dozen research studies

Participate in Research website offers volunteer opportunities for families to give back to the community and learn about science

The Floer family — mom Amalia, dad Darren, and sons Joseph, Santi, and Sebastian — volunteer to participate in research studies at the 91��ɫ.

The Floer family volunteers to participate in research studies at the 91��ɫ.

Adrian Shellard, for the 91��ɫ

In between soccer games and homework sessions, the three young boys in the Floer family do a unique kind of volunteer work: They participate in research studies.

Joseph, 15; Santi, 14; and Sebastian, 10, have participated in all kinds of studies over the last three years: They’ve tried to control a remote control car with their brains; tested out their motor skills in balance tests; worn smartwatches for a week to track their activity levels and sleep patterns; played computer games inside high-tech robots; performed tasks inside an MRI machine; and filled out online surveys — all in the name of science.

“It’s interesting to do them because you learn new things and it’s not tiring to do the tasks, sometimes it’s pretty fun,” says Santi. “I learned some different things about how the body works. It’s a fun thing to do and it helps people.”

Joseph says participating in the research studies has given him a better understanding of the scientific method and made him more interested in science. “It really puts in perspective how you can do tests that other people can’t and the different things they can test for,” he says. “It feels like you are helping other people. That is a good thing about it.”

Sebastian, the youngest, hasn’t participated in as many studies as his brothers, but a favourite memory is of the time he wore sensors on his head and played with a remote control car. “You would try and control the car with your mind,” he says. “It was hard.”

Along with their parents Darren and Amalia Floer, the boys are part of the Healthy Infants and Children Clinical Research Program (HICCUP), a 91��ɫ project that is building a database of healthy children and families that researchers can access for a myriad of other studies. It’s just one of more than 400 research studies and clinical trials that are actively recruiting participants through the U91��ɫ Participate in Research website.

Healthy children — and parents — needed for research studies and clinical trials

Study participation for the Floer family has not been limited to the kids. For one study, dad Darren also wore a smartwatch along with his older two sons for a week. “It was interesting to be doing the same thing as the kids were doing. We wore the device during a regular week to see what that means in terms of sleep and movements,” says the 91��ɫ elementary school teacher. For various studies, both parents have also spent time filling out surveys and questionnaires about childhood development and cognitive issues to provide a parental perspective.

“We got the kids involved in the studies so they could do something positive and contribute to a worthwhile endeavour,” says Darren. “It opens their eyes to some of the science and health issues that are out there, and it’s an opportunity to volunteer for something that kids don’t typically get to do. It’s also something fun that a family can do together.”

Dr. Adam Kirton, MD, a member of the at the Cumming School of Medicine, a professor in the departments of paediatrics and clinical neurosciences, and an attending paediatric neurologist at the Alberta Children’s Hospital started HICCUP about three years ago as a way to help researchers get easier access to a large group of healthy control subjects.

“A lot of clinical research requires control subjects,” says Kirton. “A paediatric control study that includes children who are healthy is usually more powerful. These study participants are crucial to researchers as they explore the causes, treatments and outcomes of almost all paediatric diseases.”

Because it can be hard to find and recruit healthy research subjects, studies show that recruitment techniques can sometimes create a bias sample. ”If many of the kids in your study are the children of paediatricians, for example, that’s not a representative sample,” says Kirton. That’s why HICCUP is building a large, diverse database of healthy subjects.

So far, HICCUP has about 500 adults and children registered, making up approximately 200 families. In the last three years, researchers from 35 different studies have accessed participants through HICCUP. Kirton would like to grow HICCUP to have 3,000 registered families, so the database can support even more researchers who are conducting studies that require larger numbers of participants.

“Right now, we can get requests from researchers for something like 30 teenagers to participate in an online survey, so we can give the researcher 40 names and then they reach out to see if the family is interested in this particular study,” says Kirton. “It can really save researchers a lot of time. But a few research requests have been too ambitious for what HICCUP can do right now. We can’t yet give a researcher access to 400 adolescent boys. So it would be great if we can grow it more.”

How to join the HICCUP database for healthy families and kids

Signing up for is easy — families who enrol give their basic information: their kids’ dates of birth, preferred method of contact, how often they can be contacted, and how involved they want to be. Families are essentially just providing consent to be contacted for future research studies and retain the right to make specific participation decisions for each study request that comes their way. They can say no at any point.

Kirton has created four levels of involvement that can be selected for each family member: bronze, silver, gold or platinum. Bronze is for easier tasks like filling out a web survey, while a gold or platinum level is for studies that could involve more time, require multiple visits, or perhaps a blood draw or a test like an MRI or brain stimulation. “All studies involve minimal risk,” says Kirton.

Everyone in the Floer family, for example, is platinum level. However, when a request came in for Sebastian to do a study that required an MRI, he declined. “He didn’t want to go in the machine,” says mom Amalia, who works with the 91��ɫ Paediatric Stroke Program. “This was the only study so far that any of the boys have said ‘no’ to, but I let them decide if they are interested. We get the requests by email, and it doesn’t take much time to look at it and decide.”

Kirton says the process makes things easier for both participants and researchers. “Researchers are not scrambling for families to participate and the engagement rate is good because families have already expressed interest in potentially participating.” The success of HICCUP has already attracted interest from the University of Alberta, which has, with permission, duplicated the system in Edmonton; Kirton hopes to one day turn HICCUP into a provincial program. “I haven’t seen a research tool like this anywhere else,” he says.

How research studies and clinical trials affect doctors’ abilities to treat patients

Clinical research is essential to advance new ideas for patient care, says Kirton. “I can’t say it strongly enough.” Kirton spends at least half his time on research — research that relates to the same patients he sees in clinic, so he can see what the problems are.

His niche is children who have injuries to their brain at birth, or cerebral palsy, who typically have lifelong disabilities. “The current treatments are almost non-existent. We have very few ways to improve their motor function as they grow up, and they have to live with the disability their whole lives,” he says.

That’s why Kirton is the principal investigator on studies like Pediatric Transcranial Static Magnetic Field Stimulation to Improve Motor Learning (PSTIM), which can be found on the Participate in Research website. The study, which is open to healthy children participants age eight to 18, looks at a new form of non-invasive brain stimulation and whether it can improve motor learning.

“We want to see if it can help the brain to learn motor tasks faster. This is a new way to do it,” says Kirton, who is also a member of the . “It’s a medium level of commitment. The kids come in for three visits and they get brain stimulation mapping and it is painless. They watch a movie and they learn about the brain and then they train their hand to learn a task while they are getting this simple form of brain stimulation. We test them again after these visits to see if anything changed in their hands or their brain. So this is the control group.

“It might be a new way to use therapeutically with children who have brain injuries,” Kirton continues. “It’s a proof-of-principle study. You have to figure out if something works in healthy kids to prove it works before it is used on kids with brain injuries.”

Participation is novel way to give back

“We are really fortunate,” says Amaila. “The boys are healthy, we are healthy, and if we can help others with some of our time, it is a good thing to do.”

Darren agrees, “I feel proud of my kids that they can participate and make a difference in something that is important.”

But the final word goes to 15-year-old Joseph: “I would tell other kids it is a good idea to participate in research studies. You learn stuff and you might find an interest in those type of things. And it feels good to help others.”

This Participate in Research story is the third in a three-part series. We profile the participants of three very different studies to show how and why the general public can participate in 400-plus diverse research studies and clinical trials.