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Vol. LXI, No. 20
October 2, 2009
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300,000 Already Registered
Surgeon Love Offers New Research Recruitment Model

On the front page...

Dr. Susan Love, well-known breast surgeon, author and activist, is on a mission: to stop breast cancer before it starts.

With a grant from the Avon Foundation for Women, she’s founded the nonprofit “Love/Avon Army of Women” to recruit 1 million women who are willing to consider participating in clinical research and alert them to available studies.

Continued...


  Dr. Susan Love (c) meets with audience members.  
  Dr. Susan Love (c) meets with audience members.  

“When I was a resident in Boston [at Beth Israel Hospital],” Love told a packed EPN conference room, “if you had an abnormal Pap [Papanicolaou smear, a test for cervical cancer] then you had a total hysterectomy. Now we have a vaccine. After only 30 years…with no pink ribbons. No marches. No runs.”

That breakthrough, Love said, is linked in part to the initial lack of animal models for cervical cancer research. Because scientists focused their studies on women, they accelerated the timeline.

Now, said Love, breast cancer research needs to focus on women because “we want to go beyond the cure to what is the cause and how can we prevent it?…We’ve lost sight of the big picture because we’ve moved so far into the molecular.”

The need is great. In the U.S., breast cancer affects one in eight women and kills more women than any other cancer except lung cancer.

The Army of Women has the potential not only to increase recruitment of healthy women for research into the cause and prevention of the disease but also to help improve recruitment for clinical trials in those women who develop breast cancer, said Love.

“We go and try to get people at the time of diagnosis or recurrence when they’re most risk-averse, most frightened,” she continued. “But if we can get women comfortable with being in research on a large scale with a million-woman cohort, then we can change public opinion [about research], and when they are diagnosed they will be asking for a trial.”

The Love/Avon Army of Women (AOW) web site lets you register to receive emails about approved studies. (Men are welcome, although breast cancer is relatively rare in men.)

If you fit the criteria for a given study, then you can RSVP and be screened on the site.

Since October 2008, AOW has already registered almost 300,000 women for basic scientific and epidemiological studies.

The web site also offers a separate section for scientists with questions on studies and grant support.

The second phase, coming this fall, will invite women to participate in a 20-year longitudinal cohort called the “Health of Women” Study or HOW.

“This develops a model for ‘21st-century Big Science,’” Love said. “It educates women in the research process; it includes women in the collection and maintenance of data, thus engaging women in figuring out key clinical questions of the day.”

Dr. Susan Love describes how she assembled an Army of Women to participate in clinical trials.
Dr. Susan Love describes how she assembled an Army of Women to participate in clinical trials.
The HIPAA-compliant web site is designed to protect privacy, Love said, and could serve as a model for the use of electronic medical records.

AOW is not a tissue bank, a database or a fund-raising site. It’s a pool of healthy women—whether normal, high-risk for breast cancer or survivor—poised to become “the first large Internet-based cohort.”

And it isn’t limited to breast cancer. Love is planning to expand the use of the HOW study beyond breast cancer over the next few years.

With an endorsement from the AARP as well as a presence on Facebook, she’s hoping to gather volunteers across the age spectrum and other demographics.

“African-American breast cancer has a separate set of risk factors,” she noted. “We need to get everybody in the tent.”

AOW is already on the march. In one national study, 1,600 volunteers were recruited in 48 hours. A Stanford trial got such a great response “they were able to increase their N [number of subjects],” Love said, and sought increased funding to support the bump.

And the challenges?

“Women complain that there have not been any studies for which they are eligible,” she said. “We need to increase minority recruitment. And there’s the technological challenge of translation into Spanish and expanding the social network.”

Love recalled asking a male colleague to explain the lack of breast cancer studies using women instead of animal models.

His reply: “Women are just too messy.”

The reasoning goes roughly like this: Study design would need to adjust for female variables like menstrual cycle, pregnancy and menopause.

It’s also possible that women’s omni-directional lives (tugged by family/job/community) affect recruitment and retention.

Historical evidence also shows that, as a research specialty, women’s health has not always been highly regarded.

A major breakthrough came with the Women’s Health Initiative in 1991. When it was launched, HHS Secretary Louis Sullivan said, “Health research for women is finally moving toward the equal status it deserves.”

Love has been active in the women’s health care movement since the early 1970s.

“As [physicians],” she said, “we need to admit that we don’t know everything.

“Women will revolutionize how we do research,” she continued. “A new way, one that uses less money. By responding to this need, the Army of Women will change the face of breast cancer research.”

For more information, visit www.armyofwomen.org/. NIHRecord Icon

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