Recruiting an army of women
Beverly Howey and her identical twin sister, Karen Duncan-Sherman, each found a breast lump in 2007. Howey’s was cancer. Duncan-Sherman’s was benign. The two women, now 45, couldn’t have more similar genetics, and they live in the same place, Wall, N.J. Why did one develop cancer and not the other? Such questions have plagued breast cancer researchers for decades.
Inherited genetic mutations, such as those in the BRCA1 and BRCA2 genes, make up only 5% to 10% of breast cancers. And though there’s a clear link between a woman’s natural estrogen exposure and her breast cancer risk, there’s no magic level that equals cancer.
“Known risk factors only account for about 30% of all breast cancers. That means we really have no clue as to what causes it,” says Dr. Susan Love, a clinical professor of surgery at UCLA and author of the bestselling “Dr. Susan Love’s Breast Book.” “To find the causes . . . we need to look both widely and wildly.”
That’s why the Dr. Susan Love Research Foundation created the Army of Women, an Internet-based campaign aimed at connecting volunteers with breast cancer researchers. Set up in partnership with the Avon Foundation for Women and scientists, the Love/Avon Army of Women takes all of those who sign up online: healthy women, women with a breast cancer diagnosis, women of all ages, shapes and colors, and even men with breast cancer. Its goal is to recruit one million volunteers.
Love says that to find the causes of breast cancer, researchers need access to all types of people from across the U.S. Researchers want to compare those who didn’t get breast cancer with those who did. They want to analyze women with a lot of genes in common but who live in different environments. And they want to follow healthy participants who may eventually receive a breast cancer diagnosis to see if they can figure out key triggers.
But recruiting research subjects is one of the most difficult and time-consuming parts of research. That’s especially true in the case of healthy women because there’s less motivation for them to seek trials and no clear way to approach them and sign them up the way there is with patients who are visiting clinics regularly.
Researchers seeking out even more specific populations, such as healthy women who’ve never been pregnant, often give up in the face of the time and money it takes to locate these women, let alone convince them to participate.
But Love has a knack for finding willing women. “Finding women who’ve never been pregnant? Easy, go to the nuns!” she says. Finding women who are willing to be guinea pigs even though there’s nothing directly in it for them? Also easy, she adds. “I knew that there are women willing to do this and that we could get them,” she says. “Doing it online meant we could do it efficiently.”
So far, more than 319,500 people have signed up since the Army of Women launched one year ago. That number includes participants ages 18 to 100, from all 50 states and from many ethnic groups, although the majority are middle-age, white and college-educated. Surprisingly, 86% have never had breast cancer and 75% have no family history either.
When a woman joins, she simply agrees to receive e-mails about research studies and the minimum eligibility requirements to participate. Interested and eligible volunteers can then go to the Army’s website ( www.armyofwomen.org) to volunteer for a study. Participants can also forward messages to neighbors, cousins and best friends’ daughters who might be eligible.
The effort already has significantly sped up some studies.
Catherine Carpenter, an epidemiologist at UCLA, needed 20 women for her pilot study testing whether weight loss and exercise could lower the risk of breast cancer in post-menopausal women. “Normally, recruitment is really challenging,” says Carpenter, who might receive one or two calls per week after running an ad about her study in the newspaper.
But after Army of Women volunteers were alerted to her recruiting needs, “in one 24-hour period, 21,000 women were interested and ultimately we ended up with a list of 140 local women ready to go,” she says. “My colleagues are totally amazed.”
Kathleen Arcaro, an environmental toxicologist at the University of Massachusetts in Amherst, wants to analyze genetic changes in the breast tissue cells present in the milk samples from 250 women. She needed women who were currently breastfeeding and who needed a breast biopsy for a suspicious lump.
If her team had sought women through the normal channels -- such as doctor’s offices and breastfeeding support groups, the project would have been too costly. But she has now enrolled 144 women, 80% of whom came from the Army of Women. “In less than a year, we’ve processed [samples from] 93 women in a study that people said we wouldn’t be able to do,” she says.
Dale Sandler, chief of epidemiology at the National Institute of Environmental Health Sciences in Research Triangle Park, N.C., used the Army of Women to help close out the enrollment of 50,900 women in the so-called Sister Study, focused on sisters of women with breast cancer. That project had been recruiting for several years but was still a few thousand shy of its enrollment goals. The word-of-mouth Internet campaign helped Sandler quickly reach enough sisters to finish off recruitment.
Sandler says that the Army of Women approach is not a good fit for all types of studies, such as hospital-based studies, clinical trials of new cancer drugs or a study that needs a true reflection of the total population. “But,” she says, “the army does have the added benefit of creating an awareness of the importance of studies and legitimizes studies that are recruiting.”
Howey and Duncan-Sherman of New Jersey were eager to sign up. Duncan-Sherman, who has never had breast cancer, has already participated in one study. “When Bev was diagnosed, I felt completely helpless,” she says of her sister. “This is something I can do to not only help Bev but maybe myself and others in the future.”
She calls the time she spent filling out questionnaires, doing phone interviews and giving blood and toenail samples “a drop in the bucket, if it is to help even one person.”
