Economic and Clinical Outcomes of (Whole Exome) Sequencing in Tapestry (NCT05045222) | Clinical Trial Compass
By InvitationNot Applicable
Economic and Clinical Outcomes of (Whole Exome) Sequencing in Tapestry
United States100,000 participantsStarted 2021-10-29
Plain-language summary
The purpose of this research is to learn more about the impact of genetic testing on healthcare costs, clinical care, and quality of life.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Tapestry patients who have received genetic results, regardless of positive or negative testing results.
* Age of 18 and older.
* Patients with an established Mayo Clinic provider prior to their enrollment in Tapestry.
Exclusion Criteria:
* Individuals less than 18 years old.
* Patients without capacity to consent (i.e., needing legal authorized representatives).
* Prisoners.
* Subjects eligible for chart review, without a Minnesota Research Authorization on record.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Change in quality of life measured through adjusted years.
Timeframe: Every 12 months for 5 years after enrollment.
2
Disease incidence measured by disease count per 100 participants.
Timeframe: 12 months
3
Change in utilization measured by total number of office visits, hospital stays, ER visits, and length of visits.
Timeframe: Every 12 months for 5 years after enrollment.
4
Change in costs measured by disease related and all-cost related costs.
Timeframe: Every 12 months for 5 years after enrollment.