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The purpose of this research is to learn more about the impact of genetic testing on healthcare costs, clinical care, and quality of life.
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| Measure | Description | Time Frame |
|---|---|---|
| Change in quality of life measured through adjusted years. | Measuring quality of life through adjusted years due to learning Tapestry test results. | Every 12 months for 5 years after enrollment. |
| Disease incidence measured by disease count per 100 participants. | Number of disease incidences per 100 participants. | 12 months |
| Change in utilization measured by total number of office visits, hospital stays, ER visits, and length of visits. | Composite of: Number of Office-based visits. Number of Hospital stays and length of visits. Number of ER visits. | Every 12 months for 5 years after enrollment. |
| Change in costs measured by disease related and all-cost related costs. | Cost Composite of: Disease-related costs. Disease-related costs by utilization category. All-cause costs. All-cause costs by utilization category. | Every 12 months for 5 years after enrollment. |
| Measure | Description | Time Frame |
|---|---|---|
| Change in quality of life measured through adjusted years from subgroups. | Measuring quality of life through adjusted years due to learning Tapestry test results categorized by subgroups: minority races, 65 years and older, etc. | Every 12 months for 5 years after enrollment. |
| Change in quality of life measured through adjusted years from different scenarios. |
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Inclusion Criteria:
Exclusion Criteria:
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The study population will include participants of the Tapestry study, which is an ongoing project aimed at studying the genetic risk factors that impact medical care of patients at Mayo Clinic. This study will include the first 15,000 Tapestry patients who received results of 11 genes (incidental findings) after undergoing WES using a saliva sample and were enrolled January 2020 onwards. Chart review of up to 85,000 records will accompany the 15,000 enrolled and completing surveys for a total of 100,000 accrued.
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| Name | Affiliation | Role |
|---|---|---|
| Niloy Jewel Samadder, MD | Mayo Clinic | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Mayo Clinic in Arizona | Scottsdale | Arizona | 85259 | United States | ||
| Mayo Clinic |
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| Label | URL |
|---|---|
| Mayo Clinic Clinical Trials | View source |
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| ID | Term |
|---|---|
| D010342 | Patient Acceptance of Health Care |
| ID | Term |
|---|---|
| D000074822 | Treatment Adherence and Compliance |
| D015438 | Health Behavior |
| D001519 | Behavior |
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Measuring quality of life through adjusted years due to learning Tapestry test results categorized by different scenarios: disease comorbidities, patient income, education, adherence to medical orders, etc. |
| Every 12 months for 5 years after enrollment. |
| Disease incidence from subgroups. | Number of disease incidences per 100 hundred participants categorized by subgroups: minority races, 65 years and older, etc. | 12 months |
| Disease incidence from different scenarios.. | Number of disease incidences per 100 hundred participants categorized by different scenarios: disease comorbidities, patient income, education, adherence to medical orders, etc. | 12 months |
| Change in utilization from subgroups. | Composite of: Number of Office-based visits. Number of Hospital stays and length of visits. Number of ER visits. All categorized by subgroups: minority races, 65 years and older, etc. | Every 12 months for 5 years after enrollment. |
| Change in utilization from different scenarios. | Composite of: Number of Office-based visits. Number of Hospital stays and length of visits. Number of ER visits. All categorized by different scenarios: disease comorbidities, patient income, education, adherence to medical orders, etc. | Every 12 months for 5 years after enrollment. |
| Change in costs from subgroups. | All-cause costs. All-cause costs by utilization category. All categorized by subgroups: minority races, 65 years and older, etc. | Every 12 months for 5 years after enrollment. |
| Change in costs from different scenarios. | All-cause costs. All-cause costs by utilization category. All categorized by different scenarios: disease comorbidities, patient income, education, adherence to medical orders, etc. | Every 12 months for 5 years after enrollment. |
| Rochester |
| Minnesota |
| 55905 |
| United States |