Promote the study of Pharmacogenomics in the All of Us cohort

The NIH is collecting suggestions for what to study in a new large cohort of one million or more people living in the United States. The All of Us research program is part of the Precision Medicine Initiative and will recruit volunteers across the USA to share their data with researchers to look at big questions. NIH is seeking input from the public on what questions to address with the All of Us data and asks people to vote on the ideas they value the most.

PharmGKB has submitted some questions related to PGx that need your vote!

Idea # 363: Does collecting side-effect data directly from patients improve compliance, personalized drug choice and efficacy? After a drug has been approved, big ADRs are reported to MEDRA, but smaller side effects are not usually reported. While some may be known and in the drug label, novel side effects may occur in populations not included in the original trials. Small effects may lead to discontinuation or poor compliance. Collecting better data about side effects and combining with genomic data could give improved pharmacogenomic prediction of side effects and allow for better selection of drugs for a patient.

Idea #379: Do tailored educational materials for patient-participants undergoing pharmacogenetic testing promote patient engagement? We will assess and compare the level of understanding, engagement and satisfaction in patients who received pharmacogenetic results and are randomized to 1) a web-based portal with personalized educational content tailored to subject's results or 2)standard of care. Subjects will be surveyed to determine 1) understanding 2) engagement and 3) satisfaction. Educational content will be created by and housed at PharmGKB, in collaboration with genetic counselors and science education specialists.

There are also several more questions regarding PGx that are tagged and worth our comments and votes. Click on Pharmacogenomics in “What we are discussing” on the right hand panel.

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