A few years before the Huntersville eye cancer cases started to pop up, on the other side of the country in Colorado, 34-year-old Gregg Stracks was diagnosed with ocular melanoma. His wife, Sara Selig, was in medical school at the University of Colorado.
“I was being trained on making clinical decisions based on evidence,” Selig said. “Here we were in a situation with a person I cared about most in the world, trying to save his life and we didn’t have data upon which to make decisions on treatment options.”
Selig decided she needed to bring the doctors and researchers who studied and treated this disease together to gather information on patients. The hope was with more data they could come up with better treatments and eventually a cure. Selig founded the Community United for Research and Education of Ocular Melanoma initiative, or CURE OM, in 2011.
Selig was hopeful her husband's life could be saved. But the cancer metastasized to his liver. Stracks died in 2012, more than five years after his diagnosis.
Selig said developing a patient-centered registry seemed to be the the answer to the big questions she found herself asking, along with with ocular melanoma experts.
“How do we pool that knowledge? How do we pool tumor samples? How can we leverage resources and bring this information together as a community to advance the field?”
Selig said it became clear an independent registry was needed after hearing more about the cases in Huntersville in 2016. The Melanoma Research Foundation's CURE OM is leading the charge with experts in the field like Dr. Richard Carvajal of Columbia University.
“We are also going to be sure to build in that same sort of process where patients and families, if willing, can say yes, we’d be happy to share tumor material or bio specimens for research if needed.”
He said that kind of information is incredibly valuable for finding treatments. The details of the registry are still in development. The plan is to launch it next year.