About 40% of men and women will be diagnosed with cancer in their lifetimes. About 1.7 million of those cases are expected in 2016 in the United States, according to the National Cancer Institute.
Society hopes for better treatments and hopefully someday, a cure.
All of the patients diagnosed with cancer could be valuable resources helping researchers develop better therapies if researchers could study unique cases. Even patients with the same diagnosis have different genetic makeups. These differences provide clues to new genetic factors that may cause the disease, why some tumors are so resistant to treatment, and how people of different ages or ethnicities are affected.
Only 15% of adult cancer patients in the U.S. are treated at big medical centers. The vast majority get treated in community hospitals where they get clinical care. Unfortunately, this means that their tissue sample goes to the pathology department and sits there.
In an effort to solve this issue, researchers formed the Metastatic Breast Cancer Project to find patients on the internet. The traditional way is that when a patient is at a research institution, someone will approach them and ask them in person. Now, the strategy is to go directly to the patients through social media.
This strategy has already netted about 1,700 people with metastatic breast cancer, cancer that has spread beyond the breast, threatening other parts of the body.
95% of them have provided some information about their condition and more than 900 have agreed to share medical records, tumor samples, and saliva.
These numbers are huge, considering the study just launched in October 2015.
Researchers decided to set a low barrier for entry. People who sign up online get a link to a participant consent form and then provide the names of the places where they’ve been treated and of the doctors who have treated them. Staff at the institute then calls to get all the records as well as already biopsied tumor samples it can do advanced genetic analysis on.