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The purpose of this study is to compare two methods for remote genetic counseling (telephone and two-way videoconferencing) for patients who are receiving disclosure of their APOE (apolipoprotein E) genotype. The target population will consist of males and females in the age range of 60-75 years who, as potential participants in a study (Generation Study), will need to receive genetic counseling and disclosure of APOE genotype. Subjects must be willing to receive genetic counseling and disclosure remotely. Subjects must be willing to be randomized to either telephone arm or videoconference arm.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Telephone | Active Comparator | Telephone telegenetics counseling: A trained Penn genetic counselor will conduct genotype disclosure visits with the participant via telephone. The participant will be in a private room at the study site. Telephone sessions will utilize a private phone line. The genetic counselor will use standardized disclosure checklist and visual aids for the disclosure session. |
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| Videoconference | Experimental | Two-way videoconferencing telegenetics counseling: A trained Penn genetic counselor will conduct genotype disclosure visits with the participant via two-way videoconferencing. The participant will be in a private room at the study site. Videoconferencing sessions will utilize tablets or laptops with web cameras and secure/confidential software for teleconferencing. The genetic counselor will use standardized disclosure checklist and visual aids for the disclosure session. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Two-way videoconference remote genetic counseling | Other |
| ||
| Telephone remote genetic counseling |
| Measure | Description | Time Frame |
|---|---|---|
| Satisfaction with genetic counseling services as measured by the Satisfaction with Genetic Services Scale | 2-7 days | |
| Satisfaction with genetic counseling services as measured by the Satisfaction with Remote Counseling Scale | 2-7 days |
| Measure | Description | Time Frame |
|---|---|---|
| Knowledge of Genetic Disease as measured by the Cancer Genetics Knowledge Scale | 2-7 days, 6 weeks, 6 months, 12 months | |
| Disease-specific distress as measured by the Impact of Events Scale | 2-7 days, 6 weeks, 6 months, 12 months |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Angela R Bradbury, MD | University of Pennsylvania | Principal Investigator |
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| ID | Term |
|---|---|
| D000544 | Alzheimer Disease |
| D020022 | Genetic Predisposition to Disease |
| ID | Term |
|---|---|
| D003704 | Dementia |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| Other |
|
| Perceived risk of Alzheimers Disease as measured by questionnaire items measuring perceived risk in quantitative, qualitative, and relative terms | 2-7 days, 6 weeks, 6 months, 12 months |
| Responses to Genetic Testing as measured by the Impact of Genetic Testing for Alzheimer's disease (IGT-AD) scale | 2-7 days, 6 weeks, 6 months, 12 months |
| Depression as measured by the GDS Short Form | 2-7 days, 6 weeks, 6 months, 12 months |
| Anxiety as measured by the Mini State Trait Anxiety Inventory (mSTAI): | 2-7 days, 6 weeks, 6 months, 12 months |
| Knowledge of Genetic Disease as measured by the ClinSeq Knowledge Scale | 2-7 days, 6 weeks, 6 months, 12 months |
| D024801 |
| Tauopathies |
| D019636 | Neurodegenerative Diseases |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D004198 | Disease Susceptibility |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |