German-Language Websites Containing Information About Rare Diseases Lack Quality Indicators

Objective – To evaluate the quality of the information contained in websites about rare diseases and to determine if quality varies based on the supplier category of the website. Design – Questionnaire and content analysis. Setting – Germany Subjects – 693 German-language websites Methods – Websites were identified through a Google search: All 8,000 rare diseases (as listed completed 17.7% of the surveys; the other 82.3% were completed by the authors. The majority of information providers were patient organizations/support groups (38.8%) followed by medical institutions (26.8%). Information provided by individuals had the lowest quality rating. There were no statistically significant differences between the quality of information supplied by patient support groups and medical institutions. The highest quality rating was provided by associations/sponsoring bodies. Conclusion – There is not much information available on the Internet regarding rare diseases. Patient support groups and organizations are the largest provider of information. The overall quality rating of information on rare disease websites was found to be low, particularly in areas of accessibility. Website providers should be made aware of how to produce websites of higher quality with greater accessibility.