The diagnosis of a rare disease can be devastating for a number of reasons, but one is the knowledge that research on “low-profile” diseases usually happens slowly, if at all, and there is little hope for a cure or even a new treatment protocol in the near future. With research funding dollars tight, higher profile diseases often get the bulk of the funding. However, many patients, and researchers, are now turning to the Internet to help speed up research on rare disease. Patients can participate in online databases, and contribute information on their experiences with the disease—symptoms, the path to diagnosis, treatment protocols, and what has or hasn’t worked for them—for private companies to use in conducting research. Now a vast amount of information that was previously inaccessible can be shared around the world at a fast pace, and the collective wisdom of experiences of patients are helping to spur research on diseases that otherwise would receive very little attention. Some clinicians are skeptical about “outsourcing” patient data to the patients themselves via online portals, but others are hopeful that such datasourcing might revolutionize medical research in the future. Meanwhile, patients are able to play a part in their own healthcare by contributing their data to advance medical knowledge.

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