Category: Parkinson’s Disease: Clinical Trials
Objective: Describe participant engagement practices for progressive User Experience (UX) in a remote risk screening study.
Background: Digital instruments continue to gain footing in clinical trials as enhancements to in-clinic engagement. However, few studies focus on how remote engagement can be associated with high rates of attrition due to various aspects of the UX. The study design for the Parkinson’s Progression Markers Initiative (PPMI) Smell Test (ST) Direct screening structure, initiated in mid-2022, incorporates practices within the web-based portal that help to sustain progressive UX and facilitate study compliance. Olfactory dysfunction is a key risk factor for the typical symptoms of PD. Strategic use of technology enables the study to guide participants through a multi-step digital process.
Method: ST Direct engages individuals from the general population aged 60 and older without a PD diagnosis living in the US, Canada, and England. Participants are led to a web portal via QR code or URL and screened for eligibility; contact information is collected and consent is completed online. A smell test is mailed to participants to complete and submit test responses via web-based portal.
At launch of study, moderate rates of attrition were observed related to technology and ease of use. The study team then created a vanity URL, added Help Desk phone line access, restructured web-portal features including device platform compatibility, simplified portal page format, and an option to return later. Enhanced communication practices included an adapted smell test instruction sheet and additional reminder emails to address incomplete tasks in the process.
Results: This multi-layer approach provides a reliable mechanism for engagement and progressive UX illustrated in conversion rates from eligible participants to registration at 58% (37,569), Registration to consent 52% (19,483), consent to clinical questionnaire 66% (12,911), and smell test sent to submission of smell test data 56% (7,428).
Conclusion: Strategic use of technology and supportive UX throughout the study process may enable researchers to successfully engage interested participants, help maximize limited resources, and lead to more efficient and cost-effective clinical trial management of study participants as UX modes and connection evolve among target populations.
To cite this abstract in AMA style:L. Lemon, R. Dobkin, M. Kuhl, K. Fabrizio, C. Stanley, L. Heathers, C. Hobbick, B. Mcmahon, M. Totten, K. Marek. User Experience (UX): Successful Remote Engagement Strategy for Individuals at Risk for Parkinson’s Disease in PPMI [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/user-experience-ux-successful-remote-engagement-strategy-for-individuals-at-risk-for-parkinsons-disease-in-ppmi/. Accessed September 28, 2023.
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