Have you had genetic testing that found a gene change called a variant of uncertain significance (VUS)? If yes, you and your primary care provider may be able to join the STRIVE Study, a digital follow-up for patients with uncertain test results. The STRIVE Study at Memorial Sloan Kettering Cancer Center (MSK) is using a new approach to support patients with a VUS and their primary care providers.
What is genetic testing?
Genetic testing looks at some of the genes you were born with. It is done to see if you have a harmful gene change (or mutation) that puts you at a higher risk for cancer. These results may be used to help guide cancer screening and prevention recommendations, or to inform treatment options if you have a current diagnosis of cancer. Read more about genetic testing and counseling here.
What is a variant of uncertain significance (VUS)?
Genetic testing can find three types of results: positive, negative, or uncertain. A positive result means that we found a harmful gene change (or mutation) that puts you at a higher risk for cancer. A negative (or normal) result means that we did not find any harmful or uncertain gene changes. An uncertain result, also called a variant of uncertain significance (VUS), means that we found a change in a gene, but scientists do not yet know whether the change is harmful. As more information is learned about gene changes and health, most VUS are found to be normal and harmless over time.
About the STRIVE Study
The STRIVE Study aims to help patients with a VUS and their primary care providers stay up-to-date on the meaning of an uncertain genetic test result. Patients with a VUS are usually advised to follow up with their genetics care team every 1-2 years to see if scientists have new information about their VUS. Patients are also asked to update their genetics care team if they or a member of their family have a new cancer diagnosis. This information may help scientists better understand the VUS and what it may mean for the patient and their family.
In the STRIVE Study, MSK is testing a new approach for supporting patients with a VUS. We will give study participants access to a secure online patient portal, called MyGene Portal, that has educational information about their VUS result. Study participants can also invite their primary care provider to join MyGene Portal and access medical management recommendations from the genetics care team.
The STRIVE Study is led by MSK experts in cancer genetics. This research is funded by the National Human Genome Research Institute at the National Institutes of Health. There are no conflicts of interest among the researchers.
How does the STRIVE Study work?
The STRIVE Study is a randomized controlled trial. This means each person has the same chance of getting assigned to 1 of 2 groups, like getting heads or tails when flipping a coin. The control group receives the usual care. The intervention group receives the new approach. Both groups will be asked to fill out 3 online surveys over the course of 1 year, and will get up to $30 for completing the surveys. If a primary care provider joins the study, they will also be asked to fill out 1 online survey.
| Group 1: Control (Usual Care) | Group 2: Intervention (New Approach) |
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Joining the study is optional. No matter what you decide, your care at MSK will not change.
Want to learn more?
Talk to your genetic counselor or contact the study team at [email protected] or (646) 888-4044.