Service tells Canadians about medical trials

MediStudy is a small Canadian Internet company with a big idea:

• Be the crossroads for information about clinical studies in Canada.
• Connect Canadian researchers with patients eligible for testing new drugs and medical procedures.
• Be a main referral point for support groups.

“There are somewhere between 400 to 600 clinical studies started each year in Canada. These are for all areas-pharmaceutical, medical devices, alternative therapy. They take place in hospitals, in universities and in research companies. We hope that we can get a good number of these on our site,” says Dr. Greg Hawkins, MediStudy president. He’s a former vet who turned to the business side of medicine.

The company is based in Guelph, Ontario. It’s an offshoot of Endpoint Research, a company specializing in managing clinical studies.

So far, there are listings for eight clinical trials for conditions such as depression in the elderly, eczema, migraine and genital herpes. The online launch took place at the beginning of April, and Hawkins says it’ll take time for patients, caregivers and doctors to discover this medical resource.

The service is ee for patients and support associations. Research sponsors pay a fee to list their clinical trial. It’s estimated that over 900 million dollars is spent on medical research and development in Canada each year. A good chunk of this is clinical trial research. 

More accessible
“The traditional methods for clinical studies are referrals through physicians, family doctors or specialists. That’s the biggest one and will still be a very important one. But other ways are radio and newspaper ads, or flyers near the elevators at hospitals. Figures show that less than 10 per cent of patients who could qualify for a trial are participating, ” says Hawkins.

“Now when you think about that, if people aren’t near a major research hospital, or if they’re not in a city with a large population of specialists so the family doctors are in the loop-they might not have access to the same kind of information. With the Internet, people in rural Canada could go to the library, type in ‘clinical studies Canada’ or ‘medical studies’ or ‘asthma’ and find out what’s going on.”

“MediStudy isn’t meant to offer medical advice or replace that relationship with the doctor, only to meet the need patients have to want to take control of their own information and their own health care,” he says.

Screening sponsors
Statistics Canada says that around 42 per cent of Canadians look for health information on the Internet. And many are searching for treatment options through participation in clinical trials. These research studies combine medical care with scientific research. They come after promising results in a lab using animal models.

The next phases are staged testing on humans, with careful monitoring along the way. To get approval for a clinical trial, the sponsor for the research has to submit a plan of actions and supporting data to Health Canada.

According to Hawkins, before accepting any listing for a clinical trial, MediStudy requires the proof that the sponsor has gone through the review by the Research Ethics Board (REB).

Privacy concerns
The other concern is privacy for users. No registration is necessary when using the site or searching for information. But if people do want information updates, then an e-mail address is required. Hawkins says people are encouraged to make an informed decision about whether any trial is right for them.

“You can look at the trial for mood disorders for elderly people, for example. It tells you who can qualify, the location. Then they drill down to the more important information-what’s involved, how much time you’re required to give to researchers. We even have a big button for ‘print this page’ so a patient can take it in and discuss it with the doctor. That’s an example of how we want the patient to control this interaction.”

He also adds an important disclaimer: “We’re careful not to say this is the last point of hope or treatment. It’s important to remember that a clinical trial is still a research study and not everybody can get in a clinical trial. So we don’t want to offer false hope. And we try to be very careful about that in the wording on our site. I would say that it does offer an additional source of important information, one that could have an impact.”

Glossary, resources
Other sections on the site include:

• A glossary which defines medical terms in consumer language. It includes definitions from ‘a’ (abbreviated protocol) to ‘w’ (washout period).
• A backgrounder on clinical trials, what they are, the responsibilities and ethics for those involved.
• A resource center, with links to dozens of associations and support groups.

 “Eventually, that’s how we hope the world will get to know about us. Because we’ve got a lot of good stuff posted there. It’s a made in Canada solution. It’s meeting a need that we perceived in both patients and the research community. We’re rolling now, and certainly are in it for another year,” says Hawkins.