A Modest Proposal: Is The Key To Parkinson's Disease Online?

Impressive advances have been made in understanding Parkinson's disease over the past few decades. Scientists now have a better understanding of the biochemistry that underlies the illness. They have also found tantalizing hints that it may be caused by a combination of genetic factors and exposure to environmental contaminants.

But that knowledge offers little comfort to the more than 4 million people with Parkinson's worldwide who face the frightening prospect of gradually losing control over their ability to move and even speak. Though the latest scientific discoveries are promising, Parkinson's patients still rely primarily on half-century-old treatments that can cause severe side effects and lose their potency over time. Research must progress faster if we are to have any hope of improving the lives of people with Parkinson's - much less curing their disease - in the foreseeable future.

People with many other diseases face similar prospects. Even though research is moving forward, new approaches are needed if we are to achieve real breakthroughs that will make a big difference for patients any time soon.

That's why we're proposing a new approach that we call Research 2.0. It takes the same tools that have revolutionized the way people use the Internet (Web 2.0) and applies them to biomedical research. As unorthodox as it may sound, we believe that the same way people use the web to network, express themselves and offer their opinions of products and services, they can just as easily contribute valuable information for scientific research.

As one example of this new approach, 23andMe has established a partnership with our neighbors at the Parkinson's Institute in Sunnyvale, California. With funding from the Michael J. Fox Foundation, the project's goal is to develop new ways of studying Parkinson's via the Internet. Our first goal is fairly modest - to convert paper-based surveys and questionnaires to a web-based format that study participants could fill out online instead of traveling to a research site for an examination.

Down the line, we're thinking about collecting data with the same instruments people already use to operate their computers. A computer mouse, for example, might be used to measure a patient's tremor and determine whether it has the characteristics of Parkinson's or one of several similar but unrelated conditions. Some day thousands of Parkinson's patients could transmit important information about the progression of their disease and how they're responding to their treatment regimen without ever having to leave their homes.

What's the benefit of developing these new ways to collect data? It all comes down to numbers. Generally, the more complex the cause of a disease or trait, the bigger studies need to be in order to reveal it. And whatever the cause of Parkinson's is, it is incredibly complex. Research suggests Parkinson's is caused by a combination of genetic factors and environmental triggers, possibly exposure to toxins such as pesticides or toxic metals.

As a rule of thumb, most geneticists generally don't take a study seriously unless it involves at least 1,000 people with the condition being tested, along with a comparable number of unaffected individuals. Traditional efforts of that magnitude can easily cost millions of dollars. They generally require coordinated efforts by several clinics and/or laboratories, which means considerable administrative costs. People who participate in research studies have to travel to those locations to be examined by doctors or other medical professionals. Because many studies also require each participant to be examined multiple times over the course of the project, this whole process can be especially laborious and expensive - especially when you consider that people with Parkinson's disease often have difficulty getting around.

So why hasn't somebody already tried to streamline the research process by using Internet-based technologies? For one thing, according to Parkinson's Institute founder and CEO Dr. William Langston, it's actually quite difficult to automate some of the subtle observations and judgments that expert physicians make when evaluating a patient who may have Parkinson's. But he believes that with a concerted effort, it is possible to gather useful data online.

Doctors may protest that online surveys and tests will never be able to evaluate patients as well as highly trained physicians. That's probably true. But to move research forward, we need to be able to evaluate patients efficiently AND effectively. We believe Research 2.0 is one way to make that happen.