Cancer Free, But Not Home Free

Novel website fills a gap for survivors of childhood cancers

By Mary Loftus

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new network: Epidemiologist Ann Mertens created a website for pediatric cancer survivors.

Kay Hinton

Nearly 80 percent of children treated for cancer are now cured of their original disease, according to the National Cancer Institute—a vast improvement over decades past. But survivors of pediatric cancers also are more likely to have long-term health complications.

To assist these patients, Emory researchers have created SurvivorLink (cancersurvivorlink.org), a website for pediatric cancer survivors, their families, and physicians.

SurvivorLink was developed by Ann Mertens, a pediatric cancer epidemiologist at the School of Medicine, and a team of cancer and IT specialists. The site provides a survivor health care plan that includes a patient’s risk profile and recommended screenings.

“We developed guidelines with specialists based on the type of cancer patients had and the treatments they received,” Mertens says.

Funded by a three-year grant of more than $1 million from the federal Agency for Healthcare Research and Quality, SurvivorLink is unlike any existing database, serving as a connection point for patients and their families as well as a place to virtually consolidate a patient’s medical history, records, and follow-up care (which can get misplaced over time). It’s also a quick and easy way for doctors to get up to speed on a new patient’s case.

Due to their original disease and harsh treatments such as chemotherapy and radiation, pediatric cancer survivors can suffer later effects such as osteoporosis, heart disease, lung problems, and secondary cancers. About 70 percent of pediatric cancer survivors experience chronic health conditions later in life.

“This is so helpful for patients and parents of children with complex health problems,” says Lillian Meacham, a pediatric endocrinologist and medical director of the Cancer Survivor Program of the Aflac Cancer Center and Blood Disorders Service for Children’s Healthcare of Atlanta.

SurvivorLink’s secure site currently has about 225 registered users, with many more viewers from the US and around the world.

The site offers portals with educational materials about survivorship, the latest research, and helpful links. There also is a box that allows patients to indicate an interest in participating in research studies.

“We’d like to build a longitudinal health record that goes across survivors’ lifetimes. This has been missing in cancer research,” Mertens says. “The aim is to give these patients a healthy quality of life moving forward.”

Professor of Biology Greg Gibson has received a one-year pilot grant from the Aflac Cancer Center for genomic profiling of late outcomes in survivors of childhood cancer, in collaboration with Ken Brigham at Emory’s Predictive Health Institute, as well as Mertens and Karen Wasilewski in the Department of Hematology and Medical Oncology.

Gibson is trying to understand why so many survivors of early childhood cancers begin to have a range of serious health problems as they reach adulthood, and to see if the predictive health care model might be an effective intervention.

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