Objective: To characterise patterns of non-consent to optional biosample donation (Aim 1) and post-consent engagement (Aim 2) with remote blood collection in PREDICT-PD.

Background: PREDICT-PD is a longitudinal UK-based cohort of adults aged 50-80 where remote biosample collection has revealed that higher-risk participants were harder to engage than controls. Understanding attitudes towards biosample donation is crucial for study planning and retention.

Method: All participants who had completed the latest PREDICT-PD consent form were included. Aim 1 characterised non-consent to optional biosample donation in individuals who had consented to all mandatory consent statements, with a binary outcome of consent (yes/no). Aim 2 characterised patterns of post-consent engagement, for those who had already consented to biosample collection, with a binary outcome of response to remote blood collection outreach (yes/no). Descriptive analyses included means (SD), medians (ranges), frequencies and percentages. Ethnicity was excluded from analyses due to insufficient sample size. Multivariable logistic regression models including age, education, gender and health status (control, PD, prodromal, possible prodromal) assessed associations with the two binary outcomes.

Results: Aim 1 included 3737 participants who had consented to the latest consent form (59% Female, 96% White, mean age 69.9 (SD 6.1), median years in education 18 (0-30)). Optional biosample consent was high (98%). Older age was associated with lower odds of consent to biosample collection (OR 0.96, p=0.044), with no other significant associations. Aim 2 included 579 participants who had been contacted for participation in remote blood collection (50% Female, 98% White, mean age 70.4 (SD 5.8), median years in education 18 (0-30)). Initial response rate was high (80%). Being male was associated with lower odds of engagement with biosample outreach (OR 0.62, p=0.031), with no other significant associations.

Conclusion: Non-consent to biosample donation and engagement with subsequent outreach were unrelated to education level or health status in the PREDICT-PD cohort. Odds of biosample consent were moderately lower for older participants and odds of post-consent engagement were moderately lower for males. Future work should investigate successful sample return rates, after the point of engagement, and explore qualitative feedback from participants on remote blood collection.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/characterising-consent-and-engagement-with-remote-blood-collection-in-predict-pd/