The My Research Legacy Pilot Study will establish a participant registry that collects self-reported health data and answers to online survey questions about individual daily choices, diets, and exercise; data from wearable devices; and, (optional) data from genome sequencing analysis. Individuals under the age of 50 who meet eligibility criteria will answer questions using the American Heart Association's (AHA) Life's Simple 7™ My Life Check v4.0 three times over the course of 6 months, transmit data from a Fitbit Charge 2 device, and (optional) provide a saliva sample for whole genome sequencing.
2,000 Participant My Research Legacy Pilot Study
1. Day 0 - Enroll online, complete AHA's Life's Simple 7™ Survey Prospective participants will enroll in the research initiative via the My Research Legacy website (MyResearchLegacy.org). They will go through an online process in which they will answer brief, pre-qualifying questions before consenting to participate in the study.
- Participants will attest to their age and US residence, and will provide a self-reported diagnosis of cardiovascular disease (myocardial infarction, atrial fibrillation, aortic dissection, systolic congestive heart failure/cardiomyopathy) and/or stroke.
- Eligible participants will read and sign an online consent form.
- Within the participant console, the participants will answer AHA's Life's Simple 7™ My Life Check v4.0 assessment.
- Participants will be asked during the consent process if they will consent to provide medical records relevant to their diagnosis.
2. Saliva kit sent
- If participants choose to participate in the genome sequencing portion of the study, participants will receive a saliva collection kit.
- DNA will be extracted from the saliva sample.
- Genomic sequence analysis will be performed.
3. Day 90 Complete AHA's Life's Simple 7™ My Life Check v4.0 assessment; Start transmission from the Fitbit Charge 2.
4. Online Survey and contact Day 180 after enrollment, participants will receive an email requesting that they visit the participant console to repeat AHA's Life's Simple 7™ My Life Check v4.0 survey. Participants also have the option of determining whether or not they want to be contacted for future studies.
- Atrial Fibrillation
- Myocardial Infarction
- Cardiomyopathy, Dilated
- Systolic Heart Failure
- Aortic Dissection
All individuals older than 21 years but younger than 50 years of age who have a history of, or have, an aortic dissection; or systolic heart failure/cardiomyopathy; or atrial fibrillation; or myocardial infarction; or stroke.
|Type||Measure||Time Frame||Safety Issue|
|Primary||study retention||6 months|
|Secondary||Change in answers to AHA's Life's Simple 7™ My Life Check v4.0||6 months|
|Secondary||Duration of time Fitbit Charge 2 used by participants||6 months|
|Secondary||Change in Fitbit Charge 2 step count||6 months|
|Secondary||Percent saliva kit return||6 months|
|Secondary||Percent of individuals that initiate but don't complete online process||6 months|
|Secondary||Activity duration||6 months|