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Usability of a Web-Based Registry for Preclinical Alzheimer’s Disease: Implications from a Cross-Sectional Online Survey

  • Original Research
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The Journal of Prevention of Alzheimer's Disease Aims and scope Submit manuscript

Abstract

Background

We have been conducting a Japanese trial-ready cohort web study since 2019 as a web-based online registry to enroll individuals with preclinical Alzheimer’s disease to facilitate trials on Alzheimer’s disease prevention. The usability of a website might be an important factor in determining user participation and retention.

Objectives

We conducted a user questionnaire survey to analyze the usability of the Japanese trial-ready cohort website and user characteristics for future website improvement.

Design

This was a cross-sectional prospective observational study.

Setting

Online survey using Google Forms.

Participants

Among the Japanese trial-ready cohort web study participants, we enrolled those who provided consent to participate in the study and had completed one or more Cognitive Function Instrument tests before May 2, 2023. We sent an invitation e-mail, including the questionnaire web address, to eligible participants on July 21 and 22, 2023.

Measurements

We analyzed the questionnaire answers, including the system usability scale score and time of response (in 24 h). We also compared the respondents’ characteristics with that of all the Japanese trial-ready cohort web study participants to identify features associated with an increased/decreased response rate to the questionnaire.

Results

Among the 10,112 Japanese trial-ready cohort web study participants that we sent invitation e-mails, we received 1,574 eligible responses (15.6%) within three weeks of the response acceptance period. The mean system usability scale score was 67.6, and no difference in system usability scale scores was observed in terms of age or sex. Approximately half of the respondents of the Japanese trial-ready cohort web study heard about it online, whereas one-fourth heard about it via newspapers. Contribution to drug development for dementia treatment was the most frequent motivation for participating in the Japanese trial-ready cohort web study (51.5%), followed by participation in the latest research (48.1%), concerns about self-memory (43.4%), and a family history of dementia (34.6%). Female respondents responded approximately 1.5 h later than male respondents. Lastly, those who had participated in the Japanese trial-ready cohort onsite study, were in their 70’s, or had a larger number of Cognitive Function Instrument or Cogstate tests completion history were more likely to respond to the current online survey (relative risk of response > 1).

Conclusions

We conducted an online survey using Google Forms for participants in the Japanese trial-ready cohort web study to determine the usability. The results of this study might help to improve the user experience of the Japanese trial-ready cohort website itself, increase the web study registrants, maintain user retention, facilitate future online surveys, and serve as a reference for other web-based registries of presymptomatic disease status.

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Acknowledgements

Not applicable.

Funding

Funding: This study was supported by AMED (Grant no: JP21dk0207048 (T. I.) and JP21dk0207054 (Y.N)) and JSPS KAKENHI (Grant no: 21K20891 (K.S)). The sponsors had no role in the design and conduct of the study; collection, analysis, and interpretation of data; preparation of the manuscript; or review or approval of the manuscript.

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Authors and Affiliations

  1. Department of Neuropathology, Graduate School of Medicine, The University of Tokyo, Hongo 7-3-1, Bunkyo-ku, Tokyo, Japan, 113-8655

    Kenichiro Sato & Takeshi Iwatsubo

  2. Unit for Early and Exploratory Clinical Development, The University of Tokyo Hospital, Hongo 7-3-1, Bunkyo-ku, Tokyo, Japan, 113-8655

    Kenichiro Sato, Y. Niimi & Takeshi Iwatsubo

  3. Department of Neurology, Tokyo Metropolitan Geriatric Medical Center Hospital, Sakaecho 35-2, Itabashi-ku, Tokyo, Japan, 173-0015

    R. Ihara & A. Iwata

  4. Division of Neurology, Internal Medicine, National Defense Medical College, Namiki 3-2, Tokorozawa, Saitama, Japan, 359-8513

    K. Suzuki

Authors
  1. Kenichiro Sato
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  2. Y. Niimi
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  3. R. Ihara
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  4. K. Suzuki
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  5. A. Iwata
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  6. Takeshi Iwatsubo
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Corresponding authors

Correspondence to Kenichiro Sato or Takeshi Iwatsubo.

Ethics declarations

Conflict of Interest Disclosure: The authors declare that they have no conflicts of interest to disclose.

Ethical standards: The J-TRC web study was approved by the University of Tokyo Graduate School of Medicine Institutional Ethics Committee (ID:2019132NI-(3)), and online informed consent was obtained from each participant upon registration. The online survey was also approved by the ethics committee.

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Sato, K., Niimi, Y., Ihara, R. et al. Usability of a Web-Based Registry for Preclinical Alzheimer’s Disease: Implications from a Cross-Sectional Online Survey. J Prev Alzheimers Dis 11, 661–671 (2024). https://doi.org/10.14283/jpad.2024.48

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  • DOI: https://doi.org/10.14283/jpad.2024.48

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