Published on 24.02.14 in Vol 3, No 1 (2014): Jan-Mar
Works citing "Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011"
According to Crossref, the following articles are citing this article (DOI 10.2196/resprot.2916):
(note that this is only a small subset of citations)
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Azer SA, Alghofaili MM, Alsultan RM, Alrumaih NS. Accuracy and Readability of Websites on Kidney and Bladder Cancers. Journal of Cancer Education 2018;33(4):926
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. Health information behaviour of rare disease patients: seeking, finding and sharing health information. Health Information & Libraries Journal 2019;36(4):341
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Swaminathan R, Huang Y, Miller K, Pastore M, Hashimoto S, Jacobson T, Mouhlas D, Lin S. Transferring Exome Sequencing Data from Clinical Laboratories to Healthcare Providers: Lessons Learned at a Pediatric Hospital. Frontiers in Genetics 2018;9
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Pauer F, Litzkendorf S, Göbel J, Storf H, Zeidler J, Graf von der Schulenburg J. Rare Diseases on the Internet: An Assessment of the Quality of Online Information. Journal of Medical Internet Research 2017;19(1):e23
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Kurtz NS, Cote C, Heatwole C, Gagnon C, Youssof S. Patient‐reported disease burden in oculopharyngeal muscular dystrophy. Muscle & Nerve 2019;60(6):724
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Burton-Chase AM, Parker WM, Hennig K, Sisson F, Bruzzone LL. The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example. JMIR Research Protocols 2017;6(1):e12
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Laukka E, Rantakokko P, Suhonen M. Consumer-led health-related online sources and their impact on consumers: An integrative review of the literature. Health Informatics Journal 2019;25(2):247
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Bleyer AJ, Kidd K, Robins V, Martin L, Taylor A, Santi A, Tsoumas G, Hunt A, Swain E, Abbas M, Akinbola E, Vidya S, Moossavi S, Bleyer AJ, Živná M, Hartmannová H, Hodaňová K, Vyleťal P, Votruba M, Harden M, Blumenstiel B, Greka A, Kmoch S. Outcomes of patient self-referral for the diagnosis of several rare inherited kidney diseases. Genetics in Medicine 2020;22(1):142
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Persky S, Kistler WD, Klein WM, Ferrer RA. Internet Versus Virtual Reality Settings for Genomics Information Provision. Cyberpsychology, Behavior, and Social Networking 2019;22(1):7
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Azer SA, AlOlayan TI, AlGhamdi MA, AlSanea MA. Inflammatory bowel disease: An evaluation of health information on the internet. World Journal of Gastroenterology 2017;23(9):1676
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Babac A, Litzkendorf S, Schmidt K, Pauer F, Damm K, Frank M, Graf von der Schulenburg J. Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians. Interactive Journal of Medical Research 2017;6(2):e23
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Lewis J, Snyder M, Hyatt-Knorr H. Marking 15 years of the Genetic and Rare Diseases Information Center. Translational Science of Rare Diseases 2017;2(1-2):77
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. Le malattie rare: informazione e comunicazione nel patient journey. SOCIOLOGIA DELLA COMUNICAZIONE 2018;(55):30
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Mueller J, Jay C, Harper S, Davies A, Vega J, Todd C. Web Use for Symptom Appraisal of Physical Health Conditions: A Systematic Review. Journal of Medical Internet Research 2017;19(6):e202
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Babac A, Frank M, Pauer F, Litzkendorf S, Rosenfeldt D, Lührs V, Biehl L, Hartz T, Storf H, Schauer F, Wagner TOF, Graf von der Schulenburg J. Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany. BMC Health Services Research 2018;18(1)
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Köhler S, Vasilevsky NA, Engelstad M, Foster E, McMurry J, Aymé S, Baynam G, Bello SM, Boerkoel CF, Boycott KM, Brudno M, Buske OJ, Chinnery PF, Cipriani V, Connell LE, Dawkins HJ, DeMare LE, Devereau AD, de Vries B, Firth HV, Freson K, Greene D, Hamosh A, Helbig I, Hum C, Jähn JA, James R, Krause R, F. Laulederkind SJ, Lochmüller H, Lyon GJ, Ogishima S, Olry A, Ouwehand WH, Pontikos N, Rath A, Schaefer F, Scott RH, Segal M, Sergouniotis PI, Sever R, Smith CL, Straub V, Thompson R, Turner C, Turro E, Veltman MW, Vulliamy T, Yu J, von Ziegenweidt J, Zankl A, Züchner S, Zemojtel T, Jacobsen JO, Groza T, Smedley D, Mungall CJ, Haendel M, Robinson PN. The Human Phenotype Ontology in 2017. Nucleic Acids Research 2017;45(D1):D865
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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)
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Collins H, Calvo S, Greenberg K, Forman Neall L, Morrison S. Information Needs in the Precision Medicine Era: How Genetics Home Reference Can Help. interactive Journal of Medical Research 2016;5(2):e13
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Hamilton JG, Hutson SP, Frohnmayer AE, Han PKJ, Peters JA, Carr AG, Alter BP. Genetic Information‐Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes. Journal of Genetic Counseling 2015;24(5):760
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Dwyer AA, Zeng Z, Lee CS. Validating online approaches for rare disease research using latent class mixture modeling. Orphanet Journal of Rare Diseases 2021;16(1)
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Dwyer AA, Uveges M, Dockray S, Smith N. Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats. Orphanet Journal of Rare Diseases 2022;17(1)
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Hilker C, Tizek L, Rüth M, Schielein M, Biedermann T, Zink A. Leveraging internet search data to assess prevalence, interest, and unmet needs of sarcoidosis in Germany. Scientific Reports 2021;11(1)
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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
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According to Crossref, the following books are citing this article (DOI 10.2196/resprot.2916):