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WIRED: A Global Rx for Tackling Rare Diseases

July 5, 2015

WONDER WHAT IT costs to get that little pink pill in your prescription bottle? About the same as building the sprawling 2,400-room Wynn Las Vegas  casino. The cost of developing a prescription drug that gains market approval currently runs about $2.6 billion, according to a report by the Tufts Center for the Study of Drug Development.

With so much money at stake, Big Pharma is interested in Big Money when it comes to return on investment. That means developing drugs and treatments that can be marketed to the greatest number of people. Unfortunately, that excludes the “long tail” of human disease—the estimated 7,000 rare diseases that have small patient populations (defined as those with fewer then 200,000 patients)—constituencies that have never attracted much interest or attention from the pharmaceutical industry.

But now, crowd-sourced solutions are opening doors for those with less common ailments. Researchers and patients alike are tapping collective wisdom to diagnose puzzling diseases, test new therapies, track the adverse effects of prescription drugs, and possibly even create the building blocks for new drugs. Wikipedia has provided a great source of crowd-sourced medical data for doctors and patients alike for years, but a new level of sophistication has begun.

The Power of Thousands of Second Opinions

“Crowds can be wiser than even the smartest doctor in the world, but only if their collective intelligence is harnessed in the right way,” says Jared Heyman, founder of CrowdMed, a site where patients can submit their symptoms with the hope that their ailments will be solved by thousands of participating “medical detectives” from around the world. In two years, they’ve resolved more than 1,000 real-world medical puzzlers. Before finding the site, the average CrowdMed patient was sick for 8 years and incurred more than $60,000 in expenses.

Heyman cites the recent case of Joseph, 12, whose health began to deteriorate inexplicably. Over five years, Joseph and his mother consulted with 14 doctors, endured dozens of tests, and racked up $75,000 in medical expenses—but still couldn’t find answers. On CrowdMed, 42 case-solvers reached consensus that Joseph probably had Lyme disease, a diagnosis that was ruled out by his physicians because a previous test result was negative. However, the crowd noticed that the tests they had taken were old and inaccurate, and suggested a new one that confirmed the Lyme disease diagnosis—leading to his successful treatment with antibiotics.

An Rx for Suffering with Prescription Meds

Those struggling with the adverse effects of prescription drugs can find comfort with the PatientsLikeMe network, where patients compare treatments, symptoms, and experiences with others suffering from similar ailments. PatientsLikeMe has 350,000 members reporting on more than 2,500 conditions, creating a massive repository of patient-generated data on health conditions and treatments. It recently partnered with the U.S. Food and Drug Administration to explore using the platform as a way to generate adverse event reports, which the FDA uses to regulate drugs after their release. The FDA already collects such data in a number of ways including MedWatch, the FDA’s voluntary reporting system.

Gamifying the Cure

In the research lab, the crowd has also proven useful. Foldit, an experimental research project at the University of Washington, is an online game in which participants try to solve one of the trickiest computational problems in biology: protein folding. You don’t need to know anything about biology to play they game, and most of the players are not biologists.

Read more on this story at the source.

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