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

Journals

1. Azer S, Alghofaili M, Alsultan R, Alrumaih N. Accuracy and Readability of Websites on Kidney and Bladder Cancers. Journal of Cancer Education 2018;33(4):926 View
2. 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
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 View
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 View
5. 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
6. Burton-Chase A, Parker W, Hennig K, Sisson F, Bruzzone L. The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example. JMIR Research Protocols 2017;6(1):e12 View
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 View
8. Bleyer A, 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 A, 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 View
9. Persky S, Kistler W, Klein W, Ferrer R. Internet Versus Virtual Reality Settings for Genomics Information Provision. Cyberpsychology, Behavior, and Social Networking 2019;22(1):7 View
10. Azer S, AlOlayan T, AlGhamdi M, AlSanea M. Inflammatory bowel disease: An evaluation of health information on the internet. World Journal of Gastroenterology 2017;23(9):1676 View
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 View
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 View
13. Liuccio M. Le malattie rare: informazione e comunicazione nel patient journey. SOCIOLOGIA DELLA COMUNICAZIONE 2018;(55):30 View
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 View
15. Babac A, Frank M, Pauer F, Litzkendorf S, Rosenfeldt D, Lührs V, Biehl L, Hartz T, Storf H, Schauer F, Wagner T, 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) View
16. Köhler S, Vasilevsky N, Engelstad M, Foster E, McMurry J, Aymé S, Baynam G, Bello S, Boerkoel C, Boycott K, Brudno M, Buske O, Chinnery P, Cipriani V, Connell L, Dawkins H, DeMare L, Devereau A, de Vries B, Firth H, Freson K, Greene D, Hamosh A, Helbig I, Hum C, Jähn J, James R, Krause R, F. Laulederkind S, Lochmüller H, Lyon G, Ogishima S, Olry A, Ouwehand W, Pontikos N, Rath A, Schaefer F, Scott R, Segal M, Sergouniotis P, Sever R, Smith C, Straub V, Thompson R, Turner C, Turro E, Veltman M, Vulliamy T, Yu J, von Ziegenweidt J, Zankl A, Züchner S, Zemojtel T, Jacobsen J, Groza T, Smedley D, Mungall C, Haendel M, Robinson P. The Human Phenotype Ontology in 2017. Nucleic Acids Research 2017;45(D1):D865 View
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) View
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 View
19. Hamilton J, Hutson S, Frohnmayer A, Han P, Peters J, Carr A, Alter B. 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 View
20. Dwyer A, Zeng Z, Lee C. Validating online approaches for rare disease research using latent class mixture modeling. Orphanet Journal of Rare Diseases 2021;16(1) View
21. Dwyer A, 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) View
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) View
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 View

Books/Policy Documents

1. Liuccio M. Communicating Rare Diseases and Disorders in the Digital Age. View
2. Liuccio M. Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media. View