title: FindZebra: a search engine for rare diseases.
abstract: BACKGROUND
  The web has become a primary information resource about illnesses and treatments for both medical and non-medical users. Standard web search is by far the most common interface to this information. It is therefore of interest to find out how well web search engines work for diagnostic queries and what factors contribute to successes and failures. Among diseases, rare (or orphan) diseases represent an especially challenging and thus interesting class to diagnose as each is rare, diverse in symptoms and usually has scattered resources associated with it.
  
  
  METHODS
  We design an evaluation approach for web search engines for rare disease diagnosis which includes 56 real life diagnostic cases, performance measures, information resources and guidelines for customising Google Search to this task. In addition, we introduce FindZebra, a specialized (vertical) rare disease search engine. FindZebra is powered by open source search technology and uses curated freely available online medical information.
  
  
  RESULTS
  FindZebra outperforms Google Search in both default set-up and customised to the resources used by FindZebra. We extend FindZebra with specialized functionalities exploiting medical ontological information and UMLS medical concepts to demonstrate different ways of displaying the retrieved results to medical experts.
  
  
  CONCLUSIONS
  Our results indicate that a specialized search engine can improve the diagnostic quality without compromising the ease of use of the currently widely popular standard web search. The proposed evaluation approach can be valuable for future development and benchmarking. The FindZebra search engine is available at http://www.findzebra.com/.
authors: DTU Compute, Technical University of Denmark, Denmark. raddr@imm.dtu.dk
authors: Radu
authors: R
authors: Dragusin
authors: Paula
authors: P
authors: Petcu
authors: Christina
authors: C
authors: Lioma
authors: Birger
authors: B
authors: Larsen
authors: Henrik L
authors: HL
authors: Jørgensen
authors: Ingemar J
authors: IJ
authors: Cox
authors: Lars Kai
authors: LK
authors: Hansen
authors: Peter
authors: P
authors: Ingwersen
authors: Ole
authors: O
authors: Winther
mesh_terms: D054626:Consumer Health Information / Q000592:standards*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet; D008490:Medical Informatics; D035583:Rare Diseases; D057386:Search Engine / Q000706:statistics & numerical data*