Biology of Osteosarcoma (BOOST) Registry and Biobank launches online for families, researchers battling osteosarcoma

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Thursday, January 12, 2017

University of Minnesota researchers launch a new website commemorating Zach Sobiech and his legacy. The project brings patients with osteosarcoma together in one online location.  Found at osteosarcoma.umn.edu, the site is known as Biology of Osteosarcoma (BOOST) Registry and Biobank. The power of the project comes from the ability to bring people with a rare condition from anywhere in the world together to help better understand this disease.

Osteosarcoma affects teens most often, but can affect people at any age. Osteosarcoma is largely known to the public through several patients who’ve opened up about their journey, including musician Zach Sobiech and athlete Terry Fox. The disease was also highlighted in the popular book and movie The Fault In Our Stars, in which one of the teen protagonists, Gus, is being treated for osteosarcoma.

“Osteosarcoma is a rare disease, and when it comes to genetic research there is power in numbers,” said Logan Spector, Ph.D., Professor of Pediatrics at the University of Minnesota Medical School and Screening, Prevention, Etiology and Cancer Survivorship Program research member at the Masonic Cancer Center. “BOOST will accelerate the study of genetic causes of this cancer.”

BOOST participants will fill out an online survey, then receive a DNA collection kit through the mail.  Patients diagnosed at any age and their families are invited to enroll. Researchers will use the samples to understand why osteosarcoma occurs and how genetics influence response to treatment.

Zach Sobiech was a Minnesota teen who made a big impact worldwide before his death from osteosarcoma in May 2013. Zach’s song “Clouds” landed on the Billboard Top 100 and continues to connect with audiences worldwide. The Zach Sobiech Osteosarcoma Fund, administered by Children’s Cancer Research Fund, has topped $1 million and funded research and discoveries into sarcomas at the University of Minnesota.

“Zach had a huge heart for other kids, especially younger children, battling osteosarcoma. He hated watching this disease rob them of their childhoods,” said Laura Sobiech, Zach’s mother. “The BOOST Registry and Biobank is an important step toward unlocking the mysteries of osteosarcoma and will someday lead to new treatments. Zach would be proud and humbled to know that his music and story has helped this happen.”

“When I first heard about the BOOST Registry, it was the anniversary of Zach’s diagnosis. That meeting is what hope looks like for families like mine,” said Alli Shoemaker, Zach’s sister. “I lost my brother, but together, we can put the pieces together and defeat this deadly disease. I couldn’t save Zach, but through this research, we could save kids in the future. For me, that’s a close second, and I’m grateful for it.”

The goal for BOOST’s first year is to enroll 500 patients and their families to expand the basis of knowledge on this disease.

Visit the site at: osteosarcoma.umn.edu