A Study to Evaluate Return of Pharmacogenomic Results Through Direct-to-Consumer Online Portal: Consumer Experiences
Overview
Tab Title Description
Study type
ObservationalDescribes the nature of a clinical study. Types include:
- Observational study — observes people and measures outcomes without affecting results.
- Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
- Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
Study IDs
Site IRB
- Rochester, Minnesota: 19-004607
Sponsor Protocol Number: 19-004607
About this study
The purpose of this study is to explore the experiences of consumers in receiving results on genetic risk of malignant hyperthermia and pseudocholinesterase deficiency via an online direct-to-consumer portal that includes robust consumer education and guidance on physician consultation, and to explore the experiences of consumers of MCGG in purchasing and using the product.
Participation eligibility
Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.
Inclusion Criteria:
- Consumers of Mayo Clinic GeneGuide who have previously indicated a willingness to be contacted regarding future research AND who have received a positive result for variants in the BCHE gene (associated with pseudocholinesterase deficiency) and CACNA1S and RYR1 genes (associated with malignant hyperthermia).
Exclusion Criteria:
- Not a consumer.
- Has not consented to be contacted.
- Has not received a relevant genetic result.
Participating Mayo Clinic locations
Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.
Mayo Clinic Location |
Status |
|
Rochester, Minn.
Mayo Clinic principal investigator Megan Allyse, Ph.D. |
Closed for enrollment |
|
More information
Publications
Publications are currently not available