This paper is in the following e-collection/theme issue:

Quality/Credibility of eHealth Information and Trust Issues (542) Information Quality in Digital Media (346)

Published on in Vol 19, No 1 (2017): January

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

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

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

Authors of this article:

Frédéric Pauer1 Author Orcid Image ;   Svenja Litzkendorf1 Author Orcid Image ;   Jens Göbel2 Author Orcid Image ;   Holger Storf2 Author Orcid Image ;   Jan Zeidler1 Author Orcid Image ;   Johann-Matthias Graf von der Schulenburg1 Author Orcid Image
Article Authors Cited by (41) Tweetations (46) Metrics

Journals

  1. Quinn L, Davis K, Yee A, Snyder H. Understanding genetic learning needs of people affected by rare disease. Journal of Genetic Counseling 2020;29(6):1050 View
  2. Crowe A, McKnight A, McAneney H. Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland. Frontiers in Public Health 2019;7 View
  3. Guan Y, Maloney K, Roter D, Pollin T. Evaluation of the Informational Content, Readability and Comprehensibility of Online Health Information on Monogenic Diabetes. Journal of Genetic Counseling 2018;27(3):608 View
  4. Yeong J, Thomas P, Buller J, Moosajee M. A Newly Developed Web-Based Resource on Genetic Eye Disorders for Users With Visual Impairment (Gene.Vision): Usability Study. Journal of Medical Internet Research 2021;23(1):e19151 View
  5. Walkowiak D, Domaradzki J. Needs assessment study of rare diseases education for nurses and nursing students in Poland. Orphanet Journal of Rare Diseases 2020;15(1) View
  6. Battineni G, Baldoni S, Chintalapudi N, Sagaro G, Pallotta G, Nittari G, Amenta F. Factors affecting the quality and reliability of online health information. DIGITAL HEALTH 2020;6 View
  7. Horrow C, Pacyna J, Cosenza C, Sharp R. Examining Physician Interactions with Disease Advocacy Organizations. AJOB Empirical Bioethics 2019;10(4):222 View
  8. Kurtz N, Cote C, Heatwole C, Gagnon C, Youssof S. Patient‐reported disease burden in oculopharyngeal muscular dystrophy. Muscle & Nerve 2019;60(6):724 View
  9. von der Lippe C, Diesen P, Feragen K. Living with a rare disorder: a systematic review of the qualitative literature. Molecular Genetics & Genomic Medicine 2017;5(6):758 View
  10. Walewski J, Donovan D, Nori M. How many zebras are there, and where are they hiding in medical literature? A literature review of publications on rare diseases. Expert Opinion on Orphan Drugs 2019;7(11):513 View
  11. Lupón Bas M, Armayones Ruiz M, Cardona Torradeflot G. Evaluación de la calidad de sitios web españoles con información sobre discapacidad visual. Atención Primaria 2019;51(4):255 View
  12. Stanarević Katavić S. Health information behaviour of rare disease patients: seeking, finding and sharing health information. Health Information & Libraries Journal 2019;36(4):341 View
  13. Babac A, von Friedrichs V, Litzkendorf S, Zeidler J, Damm K, Graf von der Schulenburg J. Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice. BMC Medical Informatics and Decision Making 2019;19(1) View
  14. Dong D, Chung R, Chan R, Gong S, Xu R. Why is misdiagnosis more likely among some people with rare diseases than others? Insights from a population-based cross-sectional study in China. Orphanet Journal of Rare Diseases 2020;15(1) View
  15. Wang S, Liu L, Lai X, Liu T, Feng J, Xu L, Zhou J, Zhou G, Chen L, Zhan S. Assessment of quality, readability and endorsement of online information on WeChat official accounts for patients with rare neurological diseases: a cross-sectional study (Preprint). JMIR Medical Informatics 2020 View
  16. Iotova V, Schalin-Jäntti C, Bruegmann P, Broesamle M, De Graaf J, Bratina N, Tillmann V, Pereira A, Hiort O. Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders. Endocrine 2021;71(3):542 View
  17. Battineni G, Pallotta G, Nittari G, Chintalapudi N, Varlaro V, Amenta F. Development of quality assessment tool for websites of the international aesthetic medicine societies. Informatics in Medicine Unlocked 2021;23:100559 View
  18. Depping M, Uhlenbusch N, Löwe B. Acceptance and commitment therapy meets peer-support. Development of a supportive self-care intervention for patients with rare diseases: a multistage development process. BMJ Open 2021;11(7):e042856 View
  19. Peláez Bejarano A, de las Aguas Robustillo Cortés M, Guzman Ramos M. Patient experience in a rare disease: application of the IEXPAC questionnaire in hereditary transthyretin-mediated amyloidosis. Expert Opinion on Orphan Drugs 2021;9(6):175 View
  20. Tumiene B. Unmet psychosocial needs of parents of children with rare, complex, and severe genetic diseases. Developmental Medicine & Child Neurology 2022;64(1):13 View
  21. Rodrigues G, de Andrade P, dos Santos J, do Amaral J, da Silva H. Impact of a digital manual for guidance on malignant hyperthermia: patient education. Orphanet Journal of Rare Diseases 2022;17(1) View
  22. Tumiene B, Peters H, Melegh B, Peterlin B, Utkus A, Fatkulina N, Pfliegler G, Graessner H, Hermanns S, Scarpa M, Blay J, Ashton S, McKay L, Baynam G. Rare disease education in Europe and beyond: time to act. Orphanet Journal of Rare Diseases 2022;17(1) View
  23. Nguyen C, Kariyawasam D, Alba‐Concepcion K, Grattan S, Hetherington K, Wakefield C, Woolfenden S, Dale R, Palmer E, Farrar M. ‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics. Health Expectations 2022;25(6):3175 View
  24. Kocher A, Simon M, Dwyer A, Blatter C, Bogdanovic J, Künzler-Heule P, Villiger P, Dan D, Distler O, Walker U, Nicca D. Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study. RMD Open 2021;7(3):e001783 View
  25. von der Lippe C, Neteland I, Feragen K. Children with a rare congenital genetic disorder: a systematic review of parent experiences. Orphanet Journal of Rare Diseases 2022;17(1) View
  26. Pinto Bravo T, Luquetti T, Nogueira T, Calil-Elias S. Quality of information on weight loss drugs from South American websites. Obesity Medicine 2022;33:100438 View
  27. Lok C, Amant F. Editorial: The challenge of treating and investigating rare gynaecologic cancers. Current Opinion in Oncology 2021;33(5):432 View
  28. Zhou L, Xu J, Yang J. Poor education and urgent information need for emergency physicians about rare diseases in China. Orphanet Journal of Rare Diseases 2022;17(1) View
  29. Thaker K, Chi Y, Birkhoff S, He D, Donovan H, Rosenblum L, Brusilovsky P, Hui V, Lee Y. Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community. JMIR Cancer 2022;8(2):e33110 View
  30. Hanisch M, Hanisch L, Kleinheinz J, Danesh G, Benz K, Jackowski J. Orthodontically Relevant Manifestations in People with Rare Diseases. Medical Principles and Practice 2019;28(3):216 View
  31. Rihm L, Dreier M, Rezvani F, Wiegand-Grefe S, Dirmaier J. 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 2022;17(1) View
  32. Petrič G, Cugmas M, Petrič R, Atanasova S. The quality of informational social support in online health communities: A content analysis of cancer-related discussions. DIGITAL HEALTH 2023;9 View
  33. Wang T, Lund B, Dow M. Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats. Journal of Hospital Librarianship 2023;23(2):83 View
  34. Liang X, Yan M, Li H, Deng Z, Lu Y, Lu P, Cai S, Li W, Fang L, Xu Z. WeChat official accounts’ posts on medication use of 251 community healthcare centers in Shanghai, China: content analysis and quality assessment. Frontiers in Medicine 2023;10 View
  35. Benito-Lozano J, Arias-Merino G, Gómez-Martínez M, Arconada-López B, Ruiz-García B, Posada de la Paz M, Alonso-Ferreira V, Fernandez-Lozano C. Psychosocial impact at the time of a rare disease diagnosis. PLOS ONE 2023;18(7):e0288875 View
  36. Wu C, Chu X, Tang K, Cheng D, Ren L. Caregiving experiences of caregivers of children with rare diseases: A qualitative meta-synthesis. Journal of Pediatric Nursing 2024;75:31 View
  37. Weddell J, Jawad D, Buckley T, Redfern J, Mansur Z, Elliott N, Hanson C, Gallagher R. Online information for spontaneous coronary artery dissection (SCAD) survivors and their families: A systematic appraisal of content and quality of websites. International Journal of Medical Informatics 2024;184:105372 View
  38. Crowe A, Kerr K, McAneney H, McMullan J, Duffy G, McKnight A. Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study. Complementary Medicine Research 2024;31(2):107 View
  39. Ziehfreund S, Tizek L, Arkema E, Zink A. Identifying sarcoidosis trends using web search and real-world data in Sweden: a retrospective longitudinal study. Scientific Reports 2024;14(1) View
  40. Fischbein R, Welsh H, Ernst S, Adik A, Nicholas L. Like and share: A mixed-methods cross-sectional survey of social media use during monochorionic diamniotic twin pregnancies. Midwifery 2024:104216 View
  41. Wallraf S, Köthemann S, Wiesemann C, Wöhlke S, Dierks M, Schmidt M, van Gils-Schmidt H, Lander J. Digital transformation in patient organizations: an exploratory study (Preprint). Journal of Medical Internet Research 2024 View