A Study to Evaluate Return of Pharmacogenomic Results Through Direct-to-Consumer Online Portal: Consumer Experiences

Overview

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 Contact

Rochester, Minn.

Mayo Clinic principal investigator

Megan Allyse, Ph.D.

Open for enrollment

Contact information:

Kirsten Riggan M.S., M.A.

(507)284-2046

Riggan.Kirsten@mayo.edu

More information

Publications

Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available