DEL.ICIO.USHEALT / GENETICS
Wanted: human guinea pigs for science. Any volunteers?
Newhouse News Service
Thursday, August 28, 2008
Medical science needs you. Well, some parts of you, at least.
There’s a lot of medical research going on across the country. But sometimes there are not enough willing bodies to participate.
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Doctors and researchers put a lot of effort into getting people to participate through radio, newspaper and TV ads. They put out fliers. They ask their patients.
Lots respond, but many don’t meet the criteria. And then, when researchers finally have participants, some disappear midway through the study.
Retired John Carroll University professor James Dague heard the call and responded. Dague, 70, has donated gallons of blood over the years, gave his DNA a decade ago and soon will be giving some skin in the name of science.
His mother had colon cancer, so he joined a national study on it about 12 years ago.
And Dague said he and most of his family have psoriasis, so a year ago he joined a Cleveland-area study on treatments for that. “All I know is they call and say, ‘Hey I need your blood,’” Dague said about the University Hospitals psoriasis study.
Case Western Reserve University student Shirah Cohen heard the call, too. Well, her mom heard the call, and when she didn’t qualify, she suggested her daughter give it a go.
Cohen, 23, is healthy, which she found out made her a good test subject for a study at University Hospitals on eczema.
They put a cream on some of her skin, then doctors used light to give that spot a sunburn. Finally, they “punched” out small pieces of skin to examine on slides. The purpose is to find out how well a cream used by eczema patients protects skin from the sun.
Cohen said it wasn’t as bad as it sounds. Her skin was numbed for the procedure and the accompanying stitch needed to close the skin.
Not everyone is willing to have small pieces of skin punched out, obviously.
Even studies that are more benign — such as one being done by a South Euclid, Ohio, dermatologist on an acne treatment — have a hard time getting enough people.
“It’s for people with moderate to severe acne,” said Janet Cohen, research study coordinator at Haber Dermatology. “A lot of people think their acne is bad; from our viewpoint, it isn’t.”
So Haber keeps recruiting. Cohen said they use a lot of radio ads.
People waiting on hold at hospitals can hear about clinical trials and studies. Stay up late and among the TV ads for detergent that will get any stain out, you might see one about joining a clinical study. Researchers also place ads in newspapers and on billboards.
Some hospitals list their clinical trials online, with many for people with serious medical conditions. A government-run site — www.clinicaltrials.gov — allows people to search for trials anywhere in the country, including those for people looking for experimental treatments that could save their lives.
Dr. Katherine Lee, a breast specialist at the Cleveland Clinic, is finishing up a study that has followed about 500 women at high risk of getting breast cancer.
Lee has had the universal experience of having people drop out of a study.
Lee’s study is looking at whether breast MRIs, an expensive procedure that most insurance companies don’t cover, are better at detecting early breast cancer than mammograms. She needed women who are at high risk of breast cancer but don’t have it.
“MRIs may benefit higher risk women by picking up the cancer earlier, before it’s spread,” Lee said.
Half the women in the three-year study would get mammograms and half would get MRIs and mammograms. The women were randomly assigned.
Lee said some women, when they found they didn’t get the MRIs, decided not to join. Others who joined seemingly dropped off the face of the Earth in the middle of the study.
“Compliance is a huge issue,” Lee said. “These women aren’t sick … and a lot of times get distracted by other things.” For instance, Lee said, they had a woman who moved and didn’t tell them.
But there are some people who, once they do one study, are willing to do more.
Kathleen Harrington took part in the breast cancer study at the Clevela d Clinic. Both her sisters had breast cancer. And her one sister’s cancer wasn’t picked up by a mammogram.
“Knowing that the mammogram didn’t show anything … I thought being in the study might force insurance companies to wake up and cover (MRIs), because in the long run it saves money,” she said.
Harrington, 61, of South Euclid, said she has been looking for other studies that she’d qualify for. “Hopefully, it helps other people.”
Researchers don’t like to talk about the “compensation” people get, but for some, it helps get participants and keep them involved in the study.
“I get paid for my blood, $95 or $75, depending on how much they take,” Dague said about the UH psoriasis study. “When I volunteered, I didn’t know I would get any money.”
Dague, who also gets validated parking, would have done it for free. But as someone who sold his blood while in college, he understands why others could use a little bit of money.
Shirah Cohen thinks she got $125 total for the eczema study. For her, it’s a little extra walking-around money she could use as a college student.
“It’s nice little bit of spending money,” said Cohen, who starts graduate school at CWRU in the fall. “It pays for some gas. I’m always trying to look for studies. I even search on UH’s Web site or I’ll look for fliers. There’s a lot of cancer studies.”
But if you’ve got something more mundane, keep listening.
Janet Cohen of Haber Dermatology is pretty certain they’ll get enough people for one study that’s starting this month right about the time school starts back up.
The subject? Head-lice treatment for kids.
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