Photo Courtesy of http://www.niknightswbc.btck.co.uk/ParalympicsLondon2012%5B/caption%5D
Do you donate blood? Or perhaps you’re an organ donor. If so, you see the value in contributing – literally, a part of yourself – to the greater good. In addition, you may see the potential direct benefit for you or those you care for. Blood and organ donations are now common practice, and it’s easy to see that their value is irrefutable.
What if we extended this concept to data about diseases. Patient registries are ways to bring data together to be used to understand disease, identify clinical trial participants, and, potentially provide statistical power to help develop new disease treatments.
Uber nerds are scarce. This database helps fill in the gaps and assist developers in understanding how to use data.
Ben Harris is a medical physicist from Indiana and an example of a patient conducting a Do It Yourself (DIY) study. Diagnosed in January of 2011 with ALS (amyotropic lateral sclerosis, also known as Lou Gehrig’s disease), Harris became both the clinical researcher and the single-patient subject in his search for effective treatment of the disease.
It was six months after his diagnosis that Harris took part in a sponsored clinical trial for a new experimental drug. The treatment gave him some relief from his ALS symptoms and hope that the progression of the disease could be inhibited. Other patients had similar results.
“Accounts similar to Ben’s began to emerge in the chat-rooms,” says Harris’ brother, who is documenting the events surrounding the ALS diagnosis and the pursuit of this new treatment. “There’s one small problem: the FDA’s process would take between 5 and 7 years before [this new drug] would be approved and made available. My brother could be dead by then.” In clinical research, time can mean everything, particularly to patients.
Harris began an intensive Internet search for information about the compound used in the trial. More…