A Web of the willing looks to help find cures, expand - The Buffalo News

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A Web of the willing looks to help find cures, expand

Donna Cummiskey is a financial manager who has worked in the University at Buffalo medical sciences for 15 years.

She always wondered how doctors with ties to the university found their research subjects, but the curiosity took on a personal tone during the last couple of years, after she was diagnosed with Type 2 diabetes and specialists discovered a brain tumor in the daughter of a close friend.

During those same years, Dr. Timothy Murphy and other UB-affiliated physicians yearned to find more ways to attract people willing to participate in research studies, as a way to help Cummiskey, her friend’s daughter, and millions of others with a vast array of illnesses, diseases and chronic conditions.

Cummiskey and the UB docs have since found a match made in cyberspace.

ResearchMatch.org is the website of a national database designed to link potential research subjects with the researchers who desperately need their help. The site serves nearly 90 of the top medical research facilities in the U.S., and UB recently latched onto it, with help from the University of Rochester.

“I’ve always known how important research is to education” because of UB, Cummiskey said. “And having dealt with diabetes and an autoimmune deficiency, I know that treatment has changed over the years. I’m participating in the research to help move that process along …

“This is also how people get cured.”

Cummiskey, 57, of Clarence, former director of resources in the residency program at UB Medical School, discovered Research Match last year. Last August, she became budget director of the UB Clinical and Translational Research Center, which deepened her appreciation of the need for willing study subjects.

Murphy, an internist who specializes in infectious diseases, heads up the clinical research center. He is grateful someone in his office chose to participate in Research Match, and hopes many more across the region will do the same.

The center sits atop the Gates Vascular Institute in the Buffalo Medical Corridor. It opened last summer and is fast becoming a hub of regional health research.

“The biggest barrier to clinical research is we can’t enroll enough subjects,” said Murphy, who came to Buffalo in 1981 as a new doctor. He has spent the bulk of his career at the Erie County and Buffalo Veterans Administration medical centers, and UB, studying the impact of the H-flu bacteria that causes middle ear infections and Chronic Obstructive Pulmonary Disease, better known as COPD.

He and a colleague, Dr. Sanjay Sethi, chief of pulmonary medicine at UB, recently received a $2.3 million grant for their continuing work to study up to 330 unique genetic strains of the H-flu bacteria to help better treat COPD. Their research efforts have spanned more than two decades, and involved 180 study volunteers from across the region.

Similar work elsewhere is helping doctors develop new and better vaccines to help prevent a variety of infections, Murphy said.

Until recently, UB-affiliated researchers at the clinical center, and in other parts of the region, worked in traditional ways to attract research subjects: advertising, press releases and bulletin board messages on campuses and in hospitals.

Research Match adds to their tool bag.

“It will really help,” Murphy said, “especially for rare diseases.”

UB researchers alone are in the midst of more than 150 clinical trials, including on HIV, hepatitis C, juvenile rheumatoid arthritis, cystic fibrosis, Alzheimer’s disease, dental diseases, obesity, diabetes, aging and new vascular devices to help treat heart disease and stroke.

That’s just the tip of the iceberg. Thousands of others across the nation are conducting research, and volunteer participants in Western New York may one day help some of them with breakthrough discoveries.

Cummiskey is among the prospects. She took a few minutes to sign up for Research Match online, and has since participated in three painless, and relatively effortless, studies: an online diabetes survey from Ohio State University; a Stanford University online study that asked her questions about sun exposure during various stages of her life; and a sleep study undertaken by the UB School of Nursing, in which she wore a belt and a watchlike monitor on her wrist to keep track of her sleep habits for a couple of weeks. She received two $25 gift certificates for her local research participation.

She has found the website simple to navigate, and discovered it’s easier to say no to a research request through an online middleman instead of directly to a researcher.

“The subjects enroll and they call the shots,” Murphy said.

Survey-style research can be conducted over vast distances, either online or by phone. More involved testing, which may require saliva, urine or blood samples, generally is restricted to within a region and often involves some sort of compensation.

About 300 Western New Yorkers have so far signed up with Research Match. “We really want that to be in the thousands,” Murphy said.

That, he said, will boost the odds that research will be successful, help Western New Yorkers feel good about their generosity and improve medical care in the region, because statistics show that the best health care is delivered in places where research is robust

How it works

To sign up: Go to ResearchMatch.org or buffaloctrc.org. You will be asked to fill out a profile. The medical information you provide is shared with the researchers you choose, and no third parties.

First contact: Researchers will reach out to you through website curators to find out if you’re interested in participating in a study. If you say yes, a researcher will contact you through email and arrange to include you in a study.

Specifics: Users can type a medical condition into a search box to find related research studies, and parents can find studies in which their children may participate.

The breakdown: More than 55,000 volunteers have signed up; 40 percent of them are healthy, 70 percent are women. Hypertension and depression are among the more common conditions of those who have signed up, and dozens of diseases are represented. For instance, 2.5 percent of participants have ADHD.

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