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Women's health research registry aims to improve women's health for future generations

e women.

Women who volunteer to participate in the Registry are asked to complete a questionnaire that includes a brief medical and lifestyle history that is used to evaluate their current medical condition (if any) and to match their information for ongoing and future research studies. Personal information, such as a woman's name, is removed from the medical information and kept separate for confidentiality purposes.

"What we call 'identifiable information' is not made public, but shared only with researchers who are investigating diseases or conditions that may impact women," explains Karen Nosakowski, research coordinator. "Only after the registrant consents is her 'identifiable information' given to the researcher."

There are several types of clinical trials, Nosakowski explains. Some are carried out with healthy participants and others enroll only patients with certain problems or conditions who may be helped by the treatment they receive. Some are aimed at prevention, while others look at new or alternative treatments, ways to detect specific diseases or procedures that could be used to diagnose diseases more accurately. The U.S. Food and Drug Agency regulates clinical trials and gives investigators permission to conduct tests under strict regulatory conditions.

Some women, Nosakowski says, want to participate in clinical studies because they have a strong family history of a particular disease or condition. Others do it purely for altruistic reasons. Blake Sakow, in her late 20's, is a marketing consultant with an in-home care company for senior citizens. She was intrigued by the idea of a research registry geared for women. "My mother suffers from fibromyalgia (a form of rheumatism) and there's so little known about it. I hope my participation in the Cedars-Sinai Research RegistryTM will in some way help her and maybe myself later along the way."
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Contact: Sandra Van
sandy@vancommunications.com
800-880-2397
Cedars-Sinai Medical Center
12-May-2004


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