ArticleJournal of medical Internet research2017
Rare Diseases on the Internet: An Assessment of the Quality of Online Information.
Article in Journal of medical Internet research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
34 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Children with a rare congenital genetic disorder: a systematic review of parent experiences.Orphanet journal of rare diseases · 2022Pooled it
- Living with a rare disorder: a systematic review of the qualitative literature.Molecular genetics & genomic medicine · 2017Pooled it
- Ability of Large Language Models to Answer Patients' Questions and Generate Educational Materials for Uncommon Retinal Conditions.Journal of vitreoretinal diseases · 2026Article
- From patients to partners: evaluating a co-designed website for congenital hypogonadotropic hypogonadism.Endocrine connections · 2026Article
- The information challenge in public health crises: a study on the reliability and readability of information provided by large language model for thunderstorm asthma.Frontiers in public health · 2026Article
- RareInsight simplifies the communication of genetic results for rare disease patients.Scientific reports · 2025Article
- Tracking Public Interest in Rare Diseases and Eosinophilic Disorders in Germany: Web Search Analysis.JMIR infodemiology · 2025Article
- Digital Transformation in Patient Organizations: Interview and Focus Group Study.Journal of medical Internet research · 2025Article
- Perception of recurrence risk in patients with IgG4-related disease: a descriptive phenomenological study.Rheumatology advances in practice · 2025Article
- Identifying sarcoidosis trends using web search and real-world data in Sweden: a retrospective longitudinal study.Scientific reports · 2024Article
- Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study.Complementary medicine research · 2024Article
- WeChat official accounts' posts on medication use of 251 community healthcare centers in Shanghai, China: content analysis and quality assessment.Frontiers in medicine · 2023Article
- Psychosocial impact at the time of a rare disease diagnosis.PloS one · 2023Article
- The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey.Orphanet journal of rare diseases · 2022Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- 'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Impact of a digital manual for guidance on malignant hyperthermia: patient education.Orphanet journal of rare diseases · 2022Article
- Poor education and urgent information need for emergency physicians about rare diseases in China.Orphanet journal of rare diseases · 2022Article
- Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community.JMIR cancer · 2022Article
- Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study.RMD open · 2021Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare diseases is frequently difficult to assess for the patients and their family members.
objectiveThe aim of this study is to assess the quality of information on the Internet about rare diseases. Additionally, the study aims to evaluate if the quality of information on rare diseases varies between different information supplier categories.
methodsA total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. Identified providers of information on the Internet about rare diseases were invited to fill out the questionnaire. The questionnaire contained questions about the information provider in general (eg, supplier category, information category, language, use of quality certificates, and target group) and about quality aspects that reflect the 13 quality criteria. Differences in subgroup analyses were performed using t tests.
resultsWe identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. For the remaining identified suppliers (570/693, 82.3%), the questionnaires were filled out by the authors based on the information available on their website. In many cases, the quality of websites was proportionally low. Furthermore, subgroup analysis showed no statistically significant differences between the quality of information provided by support group/patient organization compared to medical institution (P=.19). The quality of information by individuals (patient/relative) was significantly lower compared to information provided by support group/patient organization (P=.001), medical institution (P=.009), and other associations and sponsoring bodies (P=.001) as well.
conclusionsOverall, the quality of information on the Internet about rare diseases is low. Quality certificates are rarely used and important quality criteria are often not fulfilled completely. Additionally, some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning). Nevertheless, due to the high amount of information provided by support groups, this study shows that these are extremely valuable sources of information for patients suffering from a rare disease and their relatives.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.