Welcome to the first newsletter for the IMPACT SDM Study. Look out for our biannual updates as the study progresses.

Making major treatment decisions can be challenging. In this study, we collaborate with participating sites to enhance shared decision-making around treatment options for aortic stenosis, particularly when choosing between Transcatheter Aortic Valve Replacement (TAVR) and Surgical Aortic Valve Replacement (SAVR). Our goal is to ensure that patients understand their choices, actively participate in the decision-making process, and receive care that matters most to them.

At the heart of the IMPACT Study is a passionate team dedicated to making a difference in the lives of patients with aortic stenosis. The map above shows all the sites, Principal Investigators (PI), and Patient Partners (people with aortic stenosis who have joined our study team) who are participating in our study.

We believe that the voice of the patient is essential in shaping healthcare decision making. We want to take a moment to honor our incredible patient partners who share their experiences and insights. We will feature one patient partner per newsletter. In this edition, we want to highlight our Lead Patient Partner, Robyn Peacock.

Message from Robyn:

“I am honored to be a patient partner for the PCORI study on Shared Decision Making materials for those diagnosed with severe aortic stenosis. It was severe aortic stenosis that led to my June 2022 open heart surgery to replace my bicuspid aortic valve and my aneurysm. The symptoms leading up to that event were strong and it was very apparent something was terribly wrong.”

We are deeply grateful for our patient partners and their willingness to share their journeys. Thank you for being a vital part of our study! 

One of our stakeholder partners for this study is an organization called Heart Valve Voice US. Robyn also serves as the Director of Patient Engagement for Heart Valve Voice US. She has the opportunity to listen to patients across the country as they share their journey with heart disease.

“One thing that stands out is that many valve disease patients are asymptomatic. This is why it is crucial for patients to participate in research studies; for organizations to continue to provide education and awareness of heart disease and to promote what we all can do to live healthier lives.” ~Robyn P.

Heart Valve Voice US and its private, online support community My Valve My Voice is a destination for those who have been diagnosed with, treated for, or just curious about the disease and its symptoms, as well as for care partners who are looking for ways to support their patient. Members share their stories about diagnosis, treatment, resources such as items to bring to the hospital, questions to ask your physicians and so much more. Supporting one another throughout the journey is the mission of the community. My Valve My Voice does not charge any fee to join and participate. It is truly a safe and supportive place for all.

You can learn My Valve My Voice, Heart Valve Voice US’ online community here: https://myvalvemyvoice.com/ or email info@heartvalvevoice-us.org

We believe that by working together, we can create a brighter future for patients with aortic stenosis. If you would like to learn more about the IMPACT Study or how to get involved, please visit our website: mghdecisionsciences.org or email decisions@mgb.org

We will keep you updated on the progress of the IMPACT Study and share insights from our findings. Together, we can make a meaningful difference for patients with aortic stenosis.

Thank you for your continued support and partnership!



From the study leads

Karen Sepucha, PhD

Massachusetts General Hospital 

Sammy Elmariah, MD

University of California San Francisco

on behalf of the IMPACT team