Things looked grim just a few weeks ago for the Kentucky Women's Health Registry, an effort to collect and quantify the state of female health in the commonwealth.
The goal for 2009 was getting some 2,500 women to take the survey for the first time. With a month to go and a deadline looming, the numbers languished at around 860.
"It was like, 'Oh, no,'" said Ashley McCorkle, a research assistant on the project.
But an e-mail went out to people who have taken the survey before. Just ask a friend or two, was the plea. Ask women you know to help other women.
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Now the March 1 deadline won't be a problem. Some 1,700 women have answered that call.
"I learned a lesson," said McCorkle. "When we all work together, we can do a lot. When everybody does a little bit, together it's huge."
Fortunately, "there is no such thing as too many people" when it comes to filling out the survey, said Dr. Leslie Crofford, the Gloria W. Singletary Professor of Women's Studies at the University of Kentucky. She is also the director of the Center for the Advancement of Women's Health, which oversees the registry.
Women helping women is at the core of the registry's creation. It is an unprecedented effort to address the fact that women were historically excluded from health studies, Crofford said.
For many years, drugs they were given and treatments they received had never been tested on anyone like them.
The project, now in its third year, is an effort to get hard data on the kinds of health problems facing Kentucky women and some of the factors that contribute to ill health. The stated goal is having every woman in Kentucky take part.
A look at a color-coded map created by the registry shows many counties in the state still shaded a pale blue for zero participants.
The in-depth survey, available both online and on paper, touches on everything from the kinds of things people regularly talk about with candor, such as arthritis or fatigue, to more sensitive issues such as violence and coping with stress.
"Some of those questions are personal," said Crofford. "But they have to be personal."
One of the "totally shocking" unexpected results from the the first two years of surveys is that 50 percent of respondents said they experienced violence. Crofford said violence was broadly defined, but the level was much higher than she expected.
The results were more surprising since most of the current participants are more educated and have higher incomes than the state average.
Experiencing violence matters, Crofford said, because it causes stress, which is a contributing factor to a number of health woes, such as chronic pain, obesity and drug and alcohol abuse. Those problems contribute to life-threatening problems such as diabetes and cardiac disease.
Each year, previous participants are asked to update their health status and new women join the registry. All the information is collected in a database made available to researchers, Crofford said. It is gaining national attention as a model for how to create such a database as a research tool.
Dr. Catherine Martin, a professor of psychiatry at UK, said she used the registry to help find women to participate in a study of a promising anti-smoking treatment that is also being investigated for its potential to curb appetite.
Weight gain, or the fear of weight gain, is a key reason many women don't try to quit or relapse, she said.
Martin, a researcher funded by the National Institutes of Health, said the detailed information in the registry helped her find candidates that fit specific criteria, such as age and absence of certain kinds of prescription drugs.
The survey is an evolving document, said Crofford. Participants are able to suggest questions for future surveys, the idea being for them to feel ownership and help shape the information collected through their own varied experiences. To that end, there is a network across the state trying to get the survey into the hands of as many people as possible.
With the information provided by the registry comes the power to enact change, Crofford said.
"It gives us ammunition to go to Frankfort," she said, and lobby for better care for women.
Because of the registry, anecdotes won't have to suffice if women need better mental health treatment or wider breast cancer screening.
With the March 1 deadline looming, there is no need for people to stop urging their friends to take the survey, said McCorkle, who travels the state spreading the word about the registry.
Women taking the survey after the deadline will be added to next year's new participant tally.