Rose Khalifa’s 18-year-old niece, Mariam Elkadri, died recently of Hodgkin’s lymphoma and leukima.
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DETROIT -- Fresh from the heartbreak of watching her 18-year-old niece die from leukemia, Rose Khalifa is channeling her grief into a greater good, recruiting her fellow Arab Americans and other metro Detroiters into a once-in-a-generation national study of how lifestyle, environment and genetics affect cancer.
Mariam Elkadri, who received her diploma from Dearborn, Mich.'s Fordson High School while lying in a hospital bed, died July 28 from leukemia, which she developed as a complication of Hodgkin's lymphoma.
It was "heartbreaking and very emotional for me to watch this young, beautiful girl go through this horrible disease and spend her young years worrying about chemo, radiation, and medical appointments instead of schools, boys, or the summer fun," said Ms. Khalifa, 38, of Dearborn Heights, Mich., a nurse and cross-cultural training expert who is the executive director of Metro Healthcare Services.
Now Ms. Khalifa is asking other health care professionals to do all they can to recruit hundreds of Detroit area residents between the ages of 30 and 65 who are willing to give a onetime blood sample and answer periodic health surveys over the next 20 to 30 years.
So often people confront the cancer of a friend or relative and make heartfelt, if idle, promises to do something to help, said Ms. Khalifa. Participating in the American Cancer Society study is an opportunity to contribute in a way that will help for years to come, she said.
Michigan is one of 32 states participating in the study, known as Cancer Prevention Study-3, which began enrolling participants in 2006.
The American Cancer Society invests in studies of this size and scope once in a generation, experts said. Currently, about 7,500 Michiganders are participating, but organizers hope to increase that to 15,000. In this next phase, organizers want to recruit more men, as well as more African Americans and Arab Americans.
Three previous long-term studies helped unearth links to cancer. The Hammond Horn study (1952-55) enrolled 188,000 participants and discovered that smoking caused lung cancer, said Kate Dietrich, a Cancer Society spokeswoman.
Cancer Prevention Study-1 enrolled 1 million people between 1959 and 1972, and its findings linked obesity to cancer. Beginning in 1982, Cancer Prevention Study-2 enrolled 1.2 million people, who continue to be evaluated, said Dietrich.
Dr. Alpa Patel works in Atlanta as a principal investigator of the Cancer Prevention Study-3 project. Her goal is to enroll 300,000 people across the country. She currently has 105,000. The 32 states selected encompass about 94 percent of the U.S. population.
"Michigan also offers the unique nature of having a tremendous amount of diversity," said Dr. Patel. Researchers want to increase minority representation to about 25 percent from the current 18 percent.
Dr. Patel said previous studies had participants who were primarily of European descent. The goal is to have a more diverse study base, and the Detroit area's large African-American and Arab- American populations can contribute to that, she said.
"There's a very large Arab-American population here. There are potential genetic differences. There are obviously cultural and lifestyle differences," said Dr. Patel. "Without representation from those groups in studies like this, we're not able to understand cancer risk to the same extent that we are in individuals of Caucasian ancestry."
Bottom line, she said: "You can't study someone you don't have in your study."
The survey collects a broad range of information. There are questions about reproductive history, about how one uses different medications such as ibuprofen, aspirin and blood pressure and diabetes prescriptions. There are questions about family histories and about how often someone goes to the doctor. There are questions about exercise.
"This type of study is a great way to see how a person's lifestyle and how they live and where they live affect how and whether they get cancer," said Dr. Ken Pienta, a University of Michigan professor of medicine, who also is an American Cancer Society researcher.
"It's only this kind of big study over time that allows us to define these sort of things," said Dr. Pienta, who also is a study participant. Dr. Pienta's son, Benjamin, is a cancer survivor who successfully was treated for a sarcoma tumor more than five years ago.
"One of the areas we're interested in is the wide spectrum of lifestyle behaviors ... and how those factors collectively affect your cancer risk," Dr. Patel said.