By AMERICAN HEART ASSOCIATION NEWS
NEW ORLEANS – There’s a new, secure website where people can share their health data with researchers looking for new ways to treat and erase heart diseases and stroke.
The American Heart Association announced Sunday the launch of My Research Legacy, a network being built in conjunction with the Broad Institute of Harvard and MIT.
The premise is simple: Anyone can provide lifestyle, health, and genetic data – all of it stripped of personal identification – and the network will crunch the numbers in search of previously unrecognized patterns. Once those patterns are recognized, scientists will explore them, thus expanding the quest to treat and beat cardiovascular diseases and stroke, the top two killers in the world.
So without even leaving home, people can join research in the field of precision medicine – or, as it’s often called, “personalized medicine,” because its goal is to create a treatment plan that’s unique to each patient.
While it may seem risky to build a program based on asking patients to provide their information, officials from the AHA and the Broad Institute believe the timing is right.
They pointed to studies showing that people are willing to give such data when they trust the organization collecting it. They also noted a shift toward patients becoming more involved in their health data, such as the popularity of wearable devices; in fact, some of the data being sought is the kind that’s collected by fitness trackers.
And, considering that it only takes a few clicks to become part of this cutting-edge and potentially transformative work, organizers ultimately envision growing the network to 250,000 people.
“Patients should be a critical driving force in medical progress,” said Dr. Eric Lander, President and Founding Director of the Broad Institute, a biomedical and genomic research center with one of the world’s largest genome sequencing facilities.
Lander added that he believes the next major innovation in scientific research will not be powered by a new microscope or revolutionary therapy, but by gathering and interpreting data provided directly from patients.
“The intersection of digital technology and individuals’ demand to control their own health data has created a new revolution in healthcare – science is no longer a closed world,” said Nancy Brown, CEO of the American Heart Association. “Through My Research Legacy, people have the opportunity to donate their data for the good of all and to play a direct role in accelerating discovery with the scientific community.”
The AHA and Broad Institute also announced plans for the first use of the network: a pilot study looking at 2,000 people who survived a heart attack, stroke, atrial fibrillation, aortic dissection or systolic heart failure suffered when they were between the ages of 21 and 50.
“Throughout history, far too many lives have been impacted before the age of 50 by cardiovascular diseases and stroke,” Brown said. “Every one of these individuals are the inspiration for our work.”
The pilot study will be led by Dr. Jane Leopold, the Clinical Director for the AHA Institute for Precision Cardiovascular Medicine and Director of the Women’s Interventional Cardiology Health Initiative at the Brigham and Woman’s Hospital.
The pilot already has support from the Marfan Foundation, which will help recruit people younger than 50 who have suffered an aortic dissection. Marfan syndrome is a genetic disorder that affects the body’s connective tissue, and aortic dissection is a tearing of that tissue in the heart.
Brown introduced both My Research Legacy and the pilot study during the opening of Scientific Sessions, the AHA’s annual gathering of cardiovascular thought leaders. She was then joined onstage by several volunteers who shared their stories of heart disease disrupting their lives at a young age.
“They are serving as volunteer champions to represent the voice of the patient in research,” Brown said. “These champions will share their story and data for the greater good and inspire others to do the same.”