if you’ve ever tried searching Google or Bing for rare disease symptoms, you know that this is not effective
Physicians are trained to arrive at a medical diagnosis by starting with the potential causes that are most common. The adage is “When you hear hoofbeats, think horses—not zebras.” This is logical and effective if a patient has a common condition, but the diagnosis of an orphan condition requires a different approach. The National Organization for Rare Disorders estimates that it takes an average of 9 years for a rare disease patient to get an accurate diagnosis.
This means that many patients, caregivers and physicians are online searching for answers, using search engines and forums. But, if you’ve ever tried searching Google or Bing for rare disease symptoms, you know that this is not effective. Enter Radu Dragusin from the Technical University of Denmark and a few colleagues who have launched a new search engine dedicated to the diagnosis of rare diseases called FindZebra.com.
Their study published in the International Journal of Medical Informatics shows FindZebra outperforms Google. The research explains that the algorithms of popular search engines (such as Google) favor websites that have a number of other websites linking back to them. These links validate that the information has been found useful to others. But by its very nature, information on rare disorders is typically scarce and has fewer backlinks.