EMBARGOED UNTIL NOVEMBER 13, 2016 AT 4:00 PM ET
New Orleans, November 13, 2016—Clues that may unlock cures for heart disease and stroke are hiding in smart phones, fitness trackers, in genomic data, and within medical records. To help individuals unlock and share their personal health data to drive scientific discovery, the American Heart Association (AHA) Institute for Precision Cardiovascular Medicine today announced My Research Legacy™, a secure online network that allows people to donate their lifestyle and genetic data and participate in scientific research.
AHA plans to engage 250,000 people through My Research Legacy, a patient-powered research network, during the next several years with the aim of putting patients at the center of new scientific research approaches and possibilities.
“The intersection of digital technology and individuals’ desire 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.”
When it comes to sharing personal health data, studies show as many as 60 percent of individuals are willing to donate their data for research to benefit others and that the receiving organization’s trustworthiness and familiarity plays a key role in individuals’ willingness to donate data.
As a long-standing trusted partner to the science and research community and unwavering advocate for consumer health through its grassroots community of 30 million volunteers and supporters globally, the AHA is uniquely positioned to engage patients and the broader public in partnering with research communities, clinical care providers and health systems.
Through My Research Legacy, multiple specific scientific studies will be initiated—using the power of patient and consumer data while leveraging digital, social and mobile technologies — to solve critical problems related to understanding and treating heart disease, stroke, and vascular disease, along with attaining and maintaining cardiovascular health.
Patients Champion New Network
On November 13, a select group of AHA-recruited patient champions, representing the voice of the consumer, joined American Heart Association CEO Nancy Brown on stage at the opening session of the 2016 AHA Scientific Sessions in New Orleans, Louisiana, where thousands of members from the cardiovascular science community were in attendance.
“The American Heart Association was there for me when I needed it the most,” said patient champion, Gabby McManus, at the event. “The AHA is a partner that I trust to bring together patients, families and practitioners for improved medical research and if I can share my story and data to help other people, that’s all that matters.”
People who commit to being part of the solution will help create a comprehensive data source for qualified researchers seeking to eliminate the leading cause of death.
The Broad Institute Launches Pilot Study through My Research Legacy
The Broad Institute of MIT and Harvard has joined the AHA to create the design and engagement structure for My Research Legacy. The AHA and Broad have launched a pilot study to engage 2,000 people between the ages of 21 and 50 who have suffered a heart attack, stroke, atrial fibrillation, aortic dissection or systolic heart failure/cardiomyopathy. The Broad Institute, an academic research center dedicated to improving human health by using genomics to advance our understanding of the biology and treatment of human disease, is home to one of the largest genome sequencing facilities in the world.
In the first phase of this partnership, Broad Institute researchers and software engineers have built a secure network for individuals to opt in to the study and share their data or donate their DNA for analysis for the research effort. Later, researchers will use the information to drive insights into the causes of and potential treatments for heart disease and stroke, and share the anonymous data openly with researchers around the world to further accelerate the pace of discovery.
“There is a long-anticipated need to build a global community in which individuals can share lifestyle, genetic, medical, and behavioral information with world-class researchers to drive next-generation heart disease and stroke prevention and treatment,” said Brown. “We are committed to partnering with patients and providing researchers access to patient-generated data from across the country. With the unparalleled expertise from the Broad Institute, we can fast-track how we prevent, diagnose, translate and understand heart disease and stroke.”
“This pilot project will establish a participant registry that allows people to choose to contribute critical data spanning biometrics, genomic, wearable and behavioral information, and medical history as examples,” said Dr. Eric Lander, President and Founding Director of the Broad Institute. “Patients should be a critical driving force in medical progress.”
The Marfan Foundation has agreed to participate in the My Research Legacy pilot and will help identify individuals less than 50 years of age who have suffered an aortic dissection. Marfan syndrome is a life-threatening genetic disorder, and an early, accurate diagnosis is essential, not only for people with Marfan syndrome, but also for those with related disorders. Knowing the signs can save lives.
"We are honored to collaborate with the AHA in order for the lifestyle and genetic data from the Marfan and related disorders community to be well represented in My Research Legacy," said Michael Weamer, President and CEO, The Marfan Foundation. "People with these conditions are at high risk for aortic dissection and will embrace the opportunity to share their experiences to advance research and save lives."
Interested patients can learn more and enroll in the study at www.myresearchlegacy.org.
“We applaud the American Heart Association and the Broad Institute for this innovative collaboration that empowers patients,” said Margaret Anderson, Executive Director of FasterCures. “By bringing together the vast resources of both organizations, My Research Legacy has the potential to break new ground in our ability to identify and address the needs and preferences of patients.”
The AHA Institute for Precision Cardiovascular Medicine
The initial pilot study, led by Dr. Jane Leopold, who serves both as 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, is being designed in response to market demand for viable research study recruitment pathways to better understand the patient experience and patients’ preferred approaches to treatments and care. Individuals may join My Research Legacy at MyResearchLegacy.org.
The AHA Institute is focused exclusively on advancing precision medicine in cardiovascular and stroke care and wellbeing, and will play an essential role as a trusted source of information to the public, patient and caregiver communities.
About the AHA Institute for Precision Cardiovascular Medicine
The American Heart Association Institute for Precision Cardiovascular Medicine is the only organization dedicated exclusively to advancing precision medicine in cardiovascular care. The Institute aims to preserve and prolong health by architecting more precise scientific discoveries – those that take into account a person’s genetics, environment and lifestyle – for better prevention and treatment of cardiovascular diseases and stroke. To learn more, apply for research grants or to get involved, visit http://institute.heart.org.
About the American Heart Association
The American Heart Association is devoted to saving people from heart disease and stroke – the two leading causes of death in the world. We team with millions of volunteers to fund innovative research, fight for stronger public health policies, and provide lifesaving tools and information to prevent and treat these diseases. The Dallas-based association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. To learn more or to get involved, call 1-800-AHA-USA1, visit heart.org or call any of our offices around the country. Follow us on Facebook and Twitter.
About the Broad Institute of MIT and Harvard
Broad Institute of MIT and Harvard was launched in 2004 to empower this generation of creative scientists to transform medicine. The Broad Institute seeks to describe all the molecular components of life and their connections; discover the molecular basis of major human diseases; develop effective new approaches to diagnostics and therapeutics; and disseminate discoveries, tools, methods, and data openly to the entire scientific community. Founded by MIT, Harvard, Harvard-affiliated hospitals, and the visionary Los Angeles philanthropists Eli and Edythe L. Broad, the Broad Institute includes faculty, professional staff, and students from throughout the MIT and Harvard biomedical research communities and beyond, with collaborations spanning over a hundred private and public institutions in more than 40 countries worldwide. http://www.broadinstitute.org.
American Heart Association: Jennifer Pratt, Jennifer.Pratt@heart.org
The Broad Institute of MIT and Harvard: Paul Goldsmith, firstname.lastname@example.org