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Citing this Article

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Published on 18.01.17 in Vol 19, No 1 (2017): January

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

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

Frédéric Pauer, Svenja Litzkendorf, Jens Göbel, Holger Storf, Jan Zeidler, Johann-Matthias Graf von der Schulenburg

J Med Internet Res 2017 (Jan 18); 19(1):e23 

According to Crossref, the following articles are citing this article (DOI 10.2196/jmir.7056):

(note that this is only a small subset of citations)

  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
    CrossRef
  2. Crowe AL, McKnight AJ, McAneney H. Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland. Frontiers in Public Health 2019;7
    CrossRef
  3. Guan Y, Maloney KA, Roter DL, Pollin TI. Evaluation of the Informational Content, Readability and Comprehensibility of Online Health Information on Monogenic Diabetes. Journal of Genetic Counseling 2018;27(3):608
    CrossRef
  4. Yeong JL, 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
    CrossRef
  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)
    CrossRef
  6. Battineni G, Baldoni S, Chintalapudi N, Sagaro GG, Pallotta G, Nittari G, Amenta F. Factors affecting the quality and reliability of online health information. DIGITAL HEALTH 2020;6:205520762094899
    CrossRef
  7. Horrow C, Pacyna JE, Cosenza C, Sharp RR. Examining Physician Interactions with Disease Advocacy Organizations. AJOB Empirical Bioethics 2019;10(4):222
    CrossRef
  8. Kurtz NS, Cote C, Heatwole C, Gagnon C, Youssof S. Patient‐reported disease burden in oculopharyngeal muscular dystrophy. Muscle & Nerve 2019;60(6):724
    CrossRef
  9. von der Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Molecular Genetics & Genomic Medicine 2017;5(6):758
    CrossRef
  10. Walewski JL, 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
    CrossRef
  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
    CrossRef
  12. . Health information behaviour of rare disease patients: seeking, finding and sharing health information. Health Information & Libraries Journal 2019;36(4):341
    CrossRef
  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)
    CrossRef
  14. Dong D, Chung RY, Chan RHW, Gong S, Xu RH. 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)
    CrossRef
  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;
    CrossRef
  16. Iotova V, Schalin-Jäntti C, Bruegmann P, Broesamle M, De Graaf J, Bratina N, Tillmann V, Pereira AM, Hiort O. Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders. Endocrine 2021;71(3):542
    CrossRef
  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
    CrossRef
  18. Depping MK, 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
    CrossRef
  19. Peláez Bejarano A, de las Aguas Robustillo Cortés M, Guzman Ramos MI. 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
    CrossRef
  20. . Unmet psychosocial needs of parents of children with rare, complex, and severe genetic diseases. Developmental Medicine & Child Neurology 2022;64(1):13
    CrossRef
  21. Rodrigues G, de Andrade PV, dos Santos JM, do Amaral JLG, da Silva HCA. Impact of a digital manual for guidance on malignant hyperthermia: patient education. Orphanet Journal of Rare Diseases 2022;17(1)
    CrossRef
  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)
    CrossRef
  23. Nguyen CQ, Kariyawasam D, Alba‐Concepcion K, Grattan S, Hetherington K, Wakefield CE, Woolfenden S, Dale RC, Palmer EE, Farrar MA. ‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics. Health Expectations 2022;25(6):3175
    CrossRef
  24. Kocher A, Simon M, Dwyer AA, Blatter C, Bogdanovic J, Künzler-Heule P, Villiger PM, Dan D, Distler O, Walker UA, Nicca D. Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study. RMD Open 2021;7(3):e001783
    CrossRef
  25. von der Lippe C, Neteland I, Feragen KB. Children with a rare congenital genetic disorder: a systematic review of parent experiences. Orphanet Journal of Rare Diseases 2022;17(1)
    CrossRef
  26. Pinto Bravo TR, Luquetti TM, Nogueira TA, Calil-Elias S. Quality of information on weight loss drugs from South American websites. Obesity Medicine 2022;33:100438
    CrossRef
  27. Lok C, Amant F. Editorial: The challenge of treating and investigating rare gynaecologic cancers. Current Opinion in Oncology 2021;33(5):432
    CrossRef
  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)
    CrossRef
  29. Thaker K, Chi Y, Birkhoff S, He D, Donovan H, Rosenblum L, Brusilovsky P, Hui V, Lee YJ. Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community. JMIR Cancer 2022;8(2):e33110
    CrossRef
  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
    CrossRef
  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)
    CrossRef
  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;9:205520762311556
    CrossRef
  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
    CrossRef
  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
    CrossRef
  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
    CrossRef
  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
    CrossRef
  37. Weddell J, Jawad D, Buckley T, Redfern J, Mansur Z, Elliott N, Hanson CL, 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
    CrossRef
  38. Crowe AL, Kerr K, McAneney H, McMullan J, Duffy G, McKnight AJ. Stakeholder Perceptions of Complementary and Integrative Medicines from People Living with Rare Diseases in Northern Ireland: A Mixed Methods Study. Complementary Medicine Research 2024;:107
    CrossRef