- The Washington Times - Monday, March 27, 2006

Calling all sisters to help your sistagirls out.

The National Institute of Environmental Health Sciences (NIEHS) is recruiting 50,000 volunteers, especially minority women, to participate in an important research project about breast cancer. The goal of the 10-year confidential Sister Study is to determine the genetic and environmental causes of the potentially deadly disease by tracking the cancer-free sisters of women with breast cancer.

To ensure that the study benefits all women, however, the researchers having been trying hard to get a broad range of participants from every state, background, occupation, race and ethnicity. To date, most participants have been white, middle-class women.

“We already know about breast cancer and white women,” said Dr. Dale Sandler, the principal investigator of the Sister Study and chief of the epidemiology branch of NIEHS. “It’s important to have information about everybody.”

But we know how busy the sistagirls are with taking care of everybody but themselves. And we know how wary the sistagirls can be of studies in general.

No medication, no medical visits, no tedious medical record-keeping, not even any changes in daily habits or diet are necessary. The Sister Study is not a clinical trial; it is an observational study. All that is required are a simple blood test, a home dust sample and completion of a telephone questionnaire. There also is an annual review of that data.

Elena M. Alvarado, president and chief executive officer of the National Latina Health Network, has been a participant in the Sister Study for six months.

“It’s very important that communities of color are involved,” she said, because oftentimes they are underrepresented. Ms. Alvarado is “confident” about the care and professionalism of the diversified Sister Study staff that will look at how women’s genes and things women come in contact with at home, at work and in the community may influence breast cancer risk.

Ms. Alvarado was one of the speakers last week at “Am I My Sister’s Keeper? Building a Legacy: Making a Difference With Breast Cancer,” a forum at Shiloh Baptist Church on Ninth Street Northwest for NIEHS in coordination with the Mayor’s Interfaith Council.

The program brought together grass-roots groups, social organizations and clergy, including the Coalition of Labor Union Women, Alpha Kappa Alpha Sorority and Sisters Network Inc., to act as outreach liaisons to distribute life-saving information about breast cancer and to recruit minority women for the study.

Since October 2002, 1,171 women in the Washington area have been among the 26,000 who signed up for the Sister Study.

The push to get more minority women involved was started in the District on Thursday, and the effort will be repeated nationwide. Women ages 35 to 74 in the U.S. and Puerto Rico may be eligible and enrolled for the study until September 2007.

Studies indicate that a woman’s risk of developing breast cancer is double if she has a sibling with the disease. Growing up in the same household, sisters share genes as well as the same exposures, such as “mom’s home cooking,” Dr. Sandler said.

Ms. Alvarado joined the study because she felt helpless to do anything for her sister, Darlene, when she was diagnosed with breast cancer in 1989 at age 34. She was working for the University of Southern California at the time, but there was little information on breast cancer because there were fewer research projects.

Now, Ms. Alvarado has convinced an older sister, Rosalie, to join the study, too.

“This is important for future generations,” Ms. Alvarado said.

Cancer prevention is one of the six health care priorities for her organization, which focuses on Hispanics, a third of whom do not have health insurance, she said.

Another sistagirl guest at the Shiloh forum was Abena Disroe, a performance artist and founder of the Poet’s Den, who provides poetry therapy to cancer patients at Howard University Hospital.

Ms. Disroe’s sister, playwright Rita Disroe, died of breast cancer on April 1, 2004, at age 36. She recently signed up for the Sister Study “as a way of honoring [Rita’s] life, knowing you are trying to do something about this disease and less people will be affected.” Ms. Disroe does not want others to go through the grief and depression she had to overcome after her sister’s death. She also wants to set an example for her 12-year-old daughter, Asantewa, a budding poet, by becoming a spokeswoman for early detection because Rita Disroe did not get it.

“I’m going to tell everybody I meet about this study,” Abena Disroe said.

Dr. Sandler, an adjunct professor at the University of North Carolina at Chapel Hill, said women who participate in the study “find it’s worth it.” Many, like Ms. Alvarado and Ms. Disroe, “want to be a part of something” and “the idea of this study catches them,” she added.

For more information about the Sister Study, go to www.sisterstudy.org; or for Spanish, visit www.estudiodehermanas.org. A toll-free number is also available at 877/4SISTER (877/474-7837). For the hearing impaired, the number is 866/TTY-4SIS (866/889-4747).

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