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Researchers at UCI want to build biggest database ever on Asian American health

Researchers at UC Irvine believe a new public health study they’re helping to run – the first of its size to focus solely on Asian Americans – will help unravel some mysterious and troubling new trends linking race and cancer.

Over the next four years, UCI researchers hope to recruit 1,800 Asian Americans living in Orange and Los Angeles counties to participate in a year-long, survey-based study. As it is collected, the Southern California data will be merged with similar pools of information collected by researchers at UC San Francisco, UC Davis, Cedars-Sinai and Temple University. The combined reports, gathered from different parts of the country, will create what researchers have named the ASPIRE (Asian American Prospective Research) Cohort, a pool of information from roughly 20,000 people.

Participation in the study will be limited by age (people ages 40 to 75) and health (participants can’t have a known cancer diagnosis) and race (Asian or Asian American or multi-racial).

And the data will be based on questions asked in four surveys given over the course of a year, touching on topics as diverse as diet and lifestyle, income, sleep and stress factors, such as racial discrimination. Some participants also will be asked to give saliva samples, meaning genetic information also will help form the database.

When complete, the ASPIRE Cohort is expected to be the biggest pool of health information ever collected about Asian Americans, a demographic that accounts for nearly 8% of the U.S. population yet is the subject of only 0.17% of research funded by the National Institutes of Health.

Over time, that data could be used by researchers involved in cancer and other diseases and by researchers looking at non-health issues ranging from demographics and job trends to urban design.

“When I was training as an epidemiologist at Harvard, I worked on data from the Nurses (Health) Study, which is a pool of information collected over several decades from tens of thousands of people. But that data set is 97% White. Ours will be the first study in the nation to look at this many people from Asian cultures,” said Dr. Sunmin Lee, a professor of hematology and oncology in the UC Irvine Scho

ol of Medicine and co-leader of the cancer control program at the Chao Family Comprehensive Cancer Center.

“It will be interesting to find out what we learn from this data,” Lee added. “This will be something unique.”

The study is coming at a time when cancer trends, particularly among certain Asian American groups, are shifting in ways that confound researchers.

Overall, cancer deaths in the United States have fallen dramatically during most of this century. Two years ago, the Centers for Disease Control issued a report that found cancer death rates in the United States dropped by nearly a third (29.2%) from 1999 to 2022. The trend reflected gains in cancer treatments and early testing, genetic advances, lifestyle shifts and legislation aimed at curbing tobacco use.

The decline in cancer mortality also is viewed as particularly significant because it has come during a time when the U.S. population is growing older and more obese, two factors that tend to drive up cancer deaths.

But not all of the cancer trends are rosy. And researchers have been puzzled by a few specific, and glaring, counter-trends, including some that suggest rising cancer risks for the nation’s diverse Asian American community.

For example:

• Asian American women who’ve never smoked are twice as likely as other non-smoking women to be diagnosed with lung cancer. In fact, more than half of all Asian American women who are diagnosed with lung cancer are non-smokers, according to the Prevent Cancer Foundation. That’s not true for any other race or ethnic group.

• Though Asian American women historically have been less likely than other women to be diagnosed with breast cancer, recent trends point to a reversal, with breast cancer rates rising faster for Asian American women than in any other racial or ethnic group. The trend varies, however, among different Asian American groups, with breast cancer accounting for 17% of all cancers among Hmong women and 44% among Fijian women, according to the American Cancer Society.

• Heart disease is the leading cause of death for Americans, overall, followed by cancer. But the order is reversed for many Asian Americans, with cancer ranked as the No. 1 killer for Chinese, Filipino, Korean, and Vietnamese Americans. That’s true of no other non-Asian racial or ethnic group.

These trends are particularly important in Southern California, which has the nation’s biggest Asian American population.

While Asian Americans account for nearly 8% of the overall U.S. population, Asians and Pacific Islanders account for about 25% of all residents in Orange County and about 17% of the residents in Los Angeles County, which has the nation’s single-biggest Asian American community – 1.7 million people.

Researchers have some theories for why some groups are being hit harder by different types of cancer. Lee, of UCI, said the ASPIRE Cohort will provide data to test those theories.

Diet, for example, is viewed as a potential catalyst. Lee noted that as cancer rates have shifted among Asian Americans, they’ve also risen in some Asian countries, particularly where Western food is starting to eclipse traditional meals and agriculture.

“The Western lifestyle might be part of this,” Lee said.

“But that’s why this data will be helpful,” she added. “It’s not just diet or education or social stressors; nothing is proven to be one single risk factor.”

A hurdle to creating that database could be communication. Lee said she’s planning to contact non-English media in Orange and Los Angeles counties and use online media to attract participants. And while there is some compensation for people involved in the study – about $25 for answering all four surveys given over a year and another $10 for a saliva sample – Lee suggested money isn’t going to drive participation.

“I want more people to contribute,” Lee said. “But their children and grandchildren will benefit.”

The current round of ASPIRE Cohort funding – about $12.45 million from the National Cancer Institute – will allow for about five years of data collection and a follow-up paper, or papers. But Lee said she and other researchers would be open to following up with more data from more people, if future funding becomes available.

There is precedent for long-term, longitudinal studies being funded over multiple generations. The Nurses Health Study that Lee used as a student, which started in the early 1970s, included information from about 120,000 people when Lee was in school and now has data from about 280,000 people, making it one of the biggest studies ever conducted.

All those numbers, Lee suggested, are powerful.

“Our job is to work with the data and the numbers,” Lee said. “Only the data can tell us the story.

“We can’t just guess.”

To participate in the ASPIRE Cohort, contact aspire@uci.edu or call 949-602-4338.

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