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A 10-year-old cancer survivor is participating in a clinical trial to help kids like himself

“I think I went extra hard on myself because I know it was going for a good cause,” says Jack (second from right), pictured with his family.

Ten-year-old Jack Higgins beat cancer.

But the cancer treatment that saved his life often poses additional health challenges later in life. So Jack joined a second clinical trial aimed at helping child survivors like himself lead healthier lives.

Cancer treatment side effects that persist or arise months or sometimes years afterward are known as late effects. About 60% of childhood cancer survivors experience late effects, according to the Children’s Oncology Group (COG), which is the world’s largest research organization devoted to childhood and adolescent cancer research with more than 200 hospitals and institutions participating in its trials.

The late effects clinical trial Jack joined is evaluating how well an online, interactive, rewards-based program engages young survivors, aged 8 to 15 years, in physical activities and improves long-term health.

“Exercise positively impacts our physical and overall health, and that’s what this research study is all about,” said Rebecca McFall, MD, pediatric oncologist and principal investigator for the trial at Advocate Children’s Hospital in Illinois. “Although cancer treatments are administered as safely as possible, they can have serious side effects for the growing child, such as a loss of bone and muscle mass and altered coordination and strength. To help childhood cancer survivors return to baseline, we need to optimize other health factors.”

Participation in the late effects trial ALTE1631 (NCT03223753) was offered to Jack and his parents after he completed more than three years of chemotherapy treatment for acute lymphocytic leukemia, the most common cancer affecting children.

“I thought it was a really cool idea and a great opportunity for Jack,” said Kelly Higgins, Jack’s mom. “Part of me wonders and is curious about the correlation between his treatment and his physical health, sickness and things like that. And, of course, I would always do whatever we can to help other families in the future as well. Knowledge is power.”

The late effects trial arose from the work conducted by the COG Late Effects Committee, a team of pediatric physicians and health care providers who have an interest and expertise in this field. Late effects research protocols are focused on identifying health issues childhood cancer survivors experience after therapy and learning best practices for modifying or improving them.

As a research participant enrolled in the trial, Jack received educational handouts and an activity tracker that’s worn on the wrist. Like all participants, he was randomized to one of two physical activity programs. Both programs are online, reward-based and continue for six months, but one was designed to be more socially interactive than the other.

Jack’s physical activity and fitness were monitored at the start of the program and at six, 12 and 18 months after completion through the tracker and an outpatient visit that included laboratory blood testing, a walking test, health questionnaires, school attendance, and measurements of his blood pressure, heart rate, height, weight and waist size.

Once participant enrollment goals are reached and all data have been collected, baseline levels and changes in physical fitness, activities, fatigue, quality of life and school attendance will be compared between the two program groups.

“There’s so much we don’t know yet about treatment late effects,” Dr. McFall said. “That’s why the COG late effects committee and research trials are so important. We need to ensure we help and advocate for childhood cancer survivors to ensure they are living the best and healthiest lives they can live.”

Although the trial continues, Jack’s participation is complete. “I think I went extra hard on myself because I know it was going for a good cause,” Jack said.

The “Late Effects” clinical trial is sponsored by COG in collaboration with the National Cancer Institute.

How you can help kids like Jack

You can support critical research and clinical trials that directly impact children like Jack. To learn more or to make a gift, contact Amy Valenzio at amy.valenzio@aah.org.