Crowdsourcing can aid in data collection for rare diseases

Crowdsourcing is now a means of data collection for lung disease researchers. In testimony before Congress last month, Brookings Institution VP Darrell West described how the technique can help drug developers get early feedback while clinical trials are under way using a system developed for studying a rare lung disease.

LAMsight is an online platform through which people suffering from lymphangioleiomyomatosis can share symptoms and treatment experiences. Web operators then compile online databases of the information provided to give researchers a data point on drug effectiveness and side effects. 

Patients are a "tremendously underutilized resource," West tells Congress. That's especially true with rare diseases, for which clinical trial subject recruitment can be difficult and time-consuming. The online technique is clearly no substitute for trials with randomized assignment--and the time-tested scientific method they embody--but it can help researchers spot trends and gain early insight into the effects of experimental drugs.

- see West's testimony