Explore our sister journals here.

Maintenance Notice

Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Wednesday, July 01, 2020 at 8:00 PM to 10:00 PM EST. We apologize in advance for any inconvenience this may cause you.

Who will be affected?

Citing this Article

Right click to copy or hit: ctrl+c (cmd+c on mac)

Published on 24.02.14 in Vol 3, No 1 (2014): Jan-Mar

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

Works citing "Using the Internet to Seek Information About Genetic and Rare Diseases: A Case Study Comparing Data From 2006 and 2011"

Tamandra Morgan, Johanna Schmidt, Christy Haakonsen, Janine Lewis, Maria Della Rocca, Stephanie Morrison, Barbara Biesecker, Kimberly A. Kaphingst

JMIR Res Protoc 2014 (Feb 24); 3(1):e10 

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)

  1. 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
    CrossRef
  2. . Health information behaviour of rare disease patients: seeking, finding and sharing health information. Health Information & Libraries Journal 2019;36(4):341
    CrossRef
  3. 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
    CrossRef
  4. 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
    CrossRef
  5. 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
  6. 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
    CrossRef
  7. 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
    CrossRef
  8. 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
    CrossRef
  9. 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
    CrossRef
  10. 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
    CrossRef
  11. 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
    CrossRef
  12. 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
    CrossRef
  13. . Le malattie rare: informazione e comunicazione nel patient journey. SOCIOLOGIA DELLA COMUNICAZIONE 2018;(55):30
    CrossRef
  14. 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
    CrossRef
  15. 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)
    CrossRef
  16. 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
    CrossRef
  17. 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
  18. 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
    CrossRef
  19. 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
    CrossRef
  20. 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)
    CrossRef
  21. 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)
    CrossRef
  22. 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)
    CrossRef
  23. 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

According to Crossref, the following books are citing this article (DOI 10.2196/resprot.2916):

  1. . Communicating Rare Diseases and Disorders in the Digital Age. 2020. chapter 2:87
    CrossRef
  2. . Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media. 2022. chapter 13:218
    CrossRef