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

Journals

1. Bernhoff G, Saripanidis C, Bertilson B. “As If Neck Injuries Did Not Exist”: An Interview Study of Patients’ and Relatives’ Perceptions of Web Information on and Management of Whiplash Injuries in Sweden. Interactive Journal of Medical Research 2019;8(2):e9881 View
2. Hong S, Wang L, Zhao D, Zhang Y, Chen Y, Tan J, Liang L, Zhu T. Clinical utility in infants with suspected monogenic conditions through next‐generation sequencing. Molecular Genetics & Genomic Medicine 2019;7(6) View
3. 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
4. Babac A, Damm K, Graf von der Schulenburg J. Patient-reported data informing early benefit assessment of rare diseases in Germany: A systematic review. Health Economics Review 2019;9(1) View
5. 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
6. 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
7. Nori M. ‘Negative’ Clinical Trials in Rare Diseases and Beyond: Reclassification and Potential Solutions. Future Rare Diseases 2021;1(1) View
8. Wollmann K, der Keylen P, Tomandl J, Meerpohl J, Sofroniou M, Maun A, Voigt-Radloff S. The information needs of internet users and their requirements for online health information—A scoping review of qualitative and quantitative studies. Patient Education and Counseling 2021;104(8):1904 View
9. Nori M, Fisher-Vance D, Wuerth L, Colenso R, Donovan D. The Global Role of Patients, Advocates and Caregivers in Rare Diseases. Future Rare Diseases 2022;2(2) View
10. Lu K, Liao H. A survey of group decision making methods in Healthcare Industry 4.0: bibliometrics, applications, and directions. Applied Intelligence 2022;52(12):13689 View