Patient Driven Science an Emerging Field

A teenager does it again, not designing a new ketchup bottle top, but this time by making a cutting edge discovery in the fight against cancer and she used You Tube as a part of her project. In this instance You Tube has done more than just show videos of kids being scared by a bug or recovering from dental anesthesia, it helped bring together people with the same kind of cancer as Elana Simon. Elana, daughter of scientists, was diagnosed as a child with a kind of cancerous liver tumor called fibrolamellar that occurs mostly in women under the age of 35. The prognosis is grim because this cancer often goes undetected and undiagnosed until it has spread. People (15 of them) with the same cancer saw her video and offered to send tissue samples from their tumors so they could be genetically sequenced. A genetic mutation called a chimera was found to be present in each of the tumor samples. This discovery has been published and will hopefully lead to better ways to combat fibrolamellar and shines a spotlight on patient driven science. Patients themselves can try to make a difference in their research and collaborate in the efforts to find cures for cancer.