Illinois Women’s Health Registry

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Illinois Women’s Health Registry at Feinberg Needs More Women for Research Studies

More than 4,000 women have signed up to potentially be called upon for a host of research studies ranging from knee osteoarthritis to post-partum depression through the Illinois Women’s Health Registry. But many more women are needed for future and ongoing studies that will advance women’s health in Illinois.

The registry, launched in March 2008 at Northwestern University Feinberg School of Medicine, helped fill 12 clinical research studies last year. Those studies were at Northwestern University, Northwestern Memorial Hospital and Northwestern’s affiliates, but now the registry is expanding to help researchers throughout the state with their recruitment needs.

“Our goal for 2010 is to generate a database of 10,000 women and double the studies we filled last year,” said Sarah Bristol-Gould, coordinator of the Illinois Women’s Health Registry. “We want to be the resource that researchers turn to when they need help recruiting women for their studies.”

The purpose of the registry is to encourage researchers to study diseases in both sexes as well as those specific to women. In the past, women often were excluded from clinical research. The registry hopes to overcome that with a ready bank of motivated and willing participants.

“If we don’t study both genders, a treatment or therapy is tailored only to the population that is studied,” Bristol-Gould noted. “But treatment often needs to be different depending on whether the patient is a man or a woman. Scientists now realize that sex differences influence virtually every system in the body.”

This year, Bristol-Gould will begin contacting scientists from other institutions throughout Illinois to see how the registry, part of the Institute for Women’s Health Research at Feinberg, can help match them with participants for their research.

“Women are most likely to participate in a trial in their own backyard,” Bristol-Gould noted.

Women who join the registry are asked to complete a detailed health history questionnaire. All the information will be self reported and no medical records will be requested. The registry will contain only information the woman supplies, and the data will be stored in a secure computer server.

All female Illinois residents 18 years and older, regardless of health status, are eligible to participate in the free registry. The health questionnaire is available in a paper version or electronic version.