Cancer is the leading cause of death for Asian Americans, with some types of the disease hitting certain ethnicities harder than others.

But the how’s and why’s are not well understood because Asian Americans are severely underrepresented in medical research. That means they may be missing out on life-saving intervention programs.

Now the first national long-term study about cancer among Asian Americans has been launched to investigate health disparities among ethnic groups and uncover risk factors.

“For example, Vietnamese have historically had higher rates of cervical cancer,” said Sora Tanjasiri, a public health professor at UC Irvine. “Koreans have higher rates of liver cancer and stomach cancer. You have to look at the nuances.”

Tanjasiri, who oversees community engagement at UC Irvine’s cancer center, is part of a national effort that was recently awarded nearly $12.5 million from the National Cancer Institute.

How it will work

The plan is to start the process of recruiting 20,000 enrollees this year, with the aim of expanding the number to 50,000.

Scarlett Lin Gomez, one of three principal investigators at UC San Francisco, says a key goal is to equip Asian American communities with the cancer data to advocate for change.

“For us, this is really a data equity issue,” Gomez said. “Data is very powerful. A lot of policy and funding decisions are made off of what data are available.”

I want to join the study. Do I qualify?

Candidates for the study are adults ages 40 to 75 without a cancer diagnosis.

“Over time, we’ll be able to look at how many develop cancer,” said Iona Chen, one of the principal investigators at UC-San Francisco. “And it allows us to look at multiple cancers: lung cancer, breast cancer, gastric cancer, liver cancer.”

I live in SoCal. How do I get involved?

Cedars-Sinai is recruiting enrollees in L.A. County, while UC Irvine’s cancer center is focused on Orange County.

In SoCal and interested in volunteering?

You can currently contact each center via email:

Zul Surani, who oversees Cedars’ community outreach, says over the coming months staff, many of them bilingual, will share information about the study with organizations trusted among the region’s large Asian American communities.

“We want leaders and anyone to reach out and say, ‘My church is interested, my temple, my Gurudwara is interested,’” Surani said.

What’s the time commitment?

Researchers say it could vary, depending on the person. Keep in mind that it has the potential to span years.

Participants will give biological samples such as saliva, so tests can be run on genetic markers, and be interviewed about their lifestyle.

Enrollees would not have to visit a study site to participate. Biosamples would be collected by mail and interviews can be conducted remotely.

Why hasn’t there been a study like this before?

The investigators say it’s not for lack of trying. But they say funders have not prioritized this research. And there is a perception that there is a low cancer incidence among Asian Americans because when data across the ethnic groups is collapsed, disparities in cancer prevalence often get masked.

“That’s why we really take this responsibility very seriously,” Gomez said of the study. “We now have this role of starting this really historic endeavor.”

Tanjasiri said in her 30-plus-year-long career she hasn’t had the opportunity to access cancer data that will provide the level of detail expected from the new study.

“So we want this problem to end now,” Tanjasiri said. “We want to leave a legacy to future researchers so that they do not have to do what we’ve had to do up until now.”