Parents Can Be Diagnostic Partners for Rare Disorders

Information gained from Internet searches by parents can help with the diagnosis of rare disorders.

Medical information obtained from some Web sites can be misleading or incorrect. Investigators confirmed this weakness when they searched Google for advice about five common pediatric topics (JW Pediatr Adolesc Med Apr 28 2010). Evaluation of the first 100 Web sites listed in the search results indicated that 39% of sites gave accurate information, 11% provided inaccurate information, and 49% failed to address the topic. Government sites were the most accurate.

In contrast with this cautionary study, another report documents two cases in which parents identified the correct diagnosis for their child by using Google to search the Internet. In both instances, several physicians had missed the diagnosis of a lysosomal storage disorder. Parents …

Reviewing Author

F. Bruder Stapleton, MD

Disclosures

Consultant/Advisory BoardCareer Physician

Editorial BoardsUpToDate

Leadership Positions in Professional SocietiesAmerican Society of Pediatric Nephrology Foundation (Chair)

F. Bruder Stapleton, MD

Disclosures

Consultant/Advisory BoardCareer Physician

Editorial BoardsUpToDate

Leadership Positions in Professional SocietiesAmerican Society of Pediatric Nephrology Foundation (Chair)