Leveraging community-based participatory research capacity to recruit Pacific Islanders into a genetics study
McElfish et al.
The finding, in our words
Among 148 Marshallese adults recruited through community-based participatory research, 95.5% provided a 2 mL saliva specimen using an Oragene DNA self-collection kit and 96.6% agreed to future contact, demonstrating high acceptability of patient-centric, decentralised genetic sampling in an underserved population with disproportionate type 2 diabetes burden.
A paraphrase to the Library’s standard, never the abstract. The source is one link away and is always the authority.
In a one-week virtual home clinic with 134 participants, 86 per cent returned saliva and 84 per cent returned stool, and most components were feasible and acceptable despite device and logistical challenges. This supports decentralised, patient-centric self-collection of non-blood biospecimens for research.
This study demonstrated that a fully remote genome sequencing study using self-collected dried blood spots and buccal swabs is feasible for individuals with Prader-Willi syndrome, with all participants completing the study and reporting the process was easy despite being lengthy. The design successfully returned actionable genetic findings, including those related to blood clot formation, to participants.
Vrana-Diaz et al., Genetics in medicine open · source ↗
This systematic review of 67 studies involving 34,739 kidney disease patients found dried blood microsampling was mainly used for immunosuppressant therapeutic drug monitoring and kidney function assessment. The approach offered cost savings, was preferred by patients for home self-collection, and provides a patient-centric opportunity to upscale longitudinal sampling and reduce participation bias in decentralised kidney disease research.
Lamond et al., Journal of clinical laboratory analysis · source ↗
A Danish virtual feasibility study of 55 adults with atopic dermatitis found that remote recruitment and self-collection of DNA samples by mail, combined with weekly smartphone tasks, achieved 96% retention and over 90% task adherence, over a short eight-week study with self-reported outcomes.
Self-collected saliva samples provided adequate DNA for genotyping in preterm birth research, though questionnaire data on birth details had limited concordance with prospective records, indicating that while DNA sampling is feasible via post, phenotyping requires more reliable data collection methods for genetic studies.