Rare Diseases on the Internet: An Assessment of the Quality of Online Information

The journal Journal of Medical Internet Research has published a study about rare diseases on the Internet. The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. The aim of this study is to assess the quality of information on the Internet about rare diseases. A total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. The journal identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. Overall, the quality of information on the Internet about rare diseases is low. The full-text study you can find here.