My Research Legacy Pilot Study

American Heart Association (AHA)

Status: Terminated

Conditions: Cardiomyopathy, Dilated; Atrial Fibrillation; Systolic Heart Failure; Stroke; Myocardial Infarction; Aortic Dissection

Study type: Observational

Funder types: Other

Identifiers

NCT02958098

My Research Legacy Pilot Study

Details and patient eligibility

About

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 and transmit data from a Fitbit Charge 2 device. All other individuals who are interested in the study and meet entry criteria may also enroll.

Full description

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. Day 90 Complete AHA's Life's Simple 7™ My Life Check v4.0 assessment; Start transmission from the Fitbit Charge 2.

3. 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.

Enrollment: 2,267 patients

Sex: All

Ages: 18 to 89 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Age > or = to 18 years but < 50 years.

2. History of one (or more) of the following:

   1. Myocardial infarction
   2. Stroke
   3. Aortic dissection
   4. Systolic heart failure/cardiomyopathy
   5. Atrial fibrillation

3. Individuals of any age > or = 18 years who don't have above medical conditions but want to participate in the study.

4. Access to a computer and/or cell phone with internet access.

Exclusion criteria

1. Unwillingness to sign informed consent
2. No access to a computer and/or cell phone with internet access.

Trial design

2,267 participants in 5 patient groups

Myocardial infarction

Description:

Individuals with myocardial infarction before age 50 years.

Stroke

Description:

Individuals with stroke before age 50 years

Aortic dissection

Description:

Individuals with aortic dissection before age 50 years

Systolic heart failure

Description:

Individuals with systolic heart failure/dilated cardiomyopathy before age 50 years.

Atrial fibrillation

Description:

Individuals with atrial fibrillation before age 50 years