HOPE Study
The Healthcare Institute for Innovations in Quality at the University of Missouri-Kansas City with coordination by Saint Luke’s Mid America Heart Institute are expanding life-saving heart care.
The rate of maternal mortality is on the rise in the United States. While we know how to prevent and treat cardiovascular and coronary disease, the short- and long-term effects of heart disease in pregnant women are still not fully known. Deaths from cardiovascular disease are among the most preventable, and the world-renowned experts at University of Missouri-Kansas City Healthcare Institute for Innovations in Quality and Saint Luke’s Mid America Heart Institute are on a mission to help solve this crisis through the work of the Heart Outcomes in Pregnancy Expectations (HOPE) Study for Mom and Baby.
This nationwide, four-year observational study of U.S. pregnant people with cardiovascular disease will help medical professionals and their patients better understand and combat maternal mortality and morbidity. The National Heart, Lung, and Blood Institute awarded more than $8.3 million to fund the study, which has 36 confirmed enrolling sites nationwide.
Patients
HOPE will study the care and outcomes of 1,000 pregnant individuals with heart disease to better understand how their care influences the outcomes of mother and baby. The goal of the study is to develop standardized care protocols.
The study is accepting people with cardiovascular disease(s) at any point during pregnancy. Participants must be seen at least once by the cardio-obstetric program at a participating medical site.
What to expect:
- The initial screening will be during a routine obstetrical office visit where a provider will ask you a series of questions focused on quality of life and pregnancy.
- Two follow-up surveys (maximum) during each trimester, and then surveys at 6 to 8 weeks after delivery, and at six months post-delivery, and at one year after delivery.
For more information, complete the Contact Us form.
Providers
HOPE will study the care and outcomes of pregnant individuals with heart disease to help clinicians and patients better understand the patient characteristics, treatment, and organization of health care delivery that most influence these outcomes. The goal is to develop and disseminate standardized care protocols to combat the United States’ tragically high rate of cardiovascular-related morbidity and mortality.
We are looking for participants with known heart conditions, who can be referred to a participating medical site to join the study, after delivery of the baby and prior to discharge. About 1,000 women are expected to participate in this study over a 4-year period.
What to expect:
- The baseline visit will take place during a routine obstetrical office visit or shortly thereafter and will consist of registry questions which will add an additional 15 to 30 minutes to the visit.
- Follow-up surveys by phone, text, mail, or email during each trimester (two surveys maximum), post-partum (6 to 8 weeks after delivery), 6 months, and 1 year after delivery. Each follow-up with take 15 to 30 minutes.
To refer a patient for this study or for more information, complete the Contact Us form.
Participating providers can log into the REDCap platform.
Leadership
National Primary Investigators
Karen Florio, DO, Maternal-Fetal Medicine, University of Missouri Health Care
John Spertus, MD, MPH, Cardiology, Saint Luke’s Hospital of Kansas City and University of Missouri-Kansas City Healthcare Institute for Innovations in Quality
HOPE Study Steering Committee
Uri Elkayam, MD, Cardiology, Keck School of Medicine, University of Southern California
Nandita Scott, MD, Cardiology, Massachusetts General Hospital
John Spertus, MD, MPH, Cardiology, Saint Luke’s Hospital of Kansas City and University of Missouri-Kansas City Healthcare Institute for Innovations in Quality
Anna Grodzinsky, MD, Cardiology, Saint Luke’s Hospital of Kansas City
Karen Florio, DO, Maternal-Fetal Medicine, University of Missouri Health Care
Melissa Russo, MD, Maternal-Fetal Medicine, Women & Infants / Rhode Island Hospital
Connie Graves, MD, Maternal-Fetal Medicine, University of Tennessee Medical Center/Tennessee Maternal Fetal Medicine
Catherine Albright, MD, Maternal-Fetal Medicine, University of Washington Medicine
HOPE Study Echo Core Lab
Nandita Scott, MD, Lab Co-Director, Massachusetts General Hospital
Amy Sarma, MD, Lab Co-Director, Massachusetts General Hospital
Meesha Vullikanti, Lab Coordinator, Massachusetts General Hospital
Frequently asked questions
- What is the number one cause of death of pregnant women in America?
Heart disease is the leading cause of death among pregnant women in the United States, accounting for 25% of all maternal deaths nationwide.
Read an article about pregnancy-related deaths from the CDC.
- What is a registry and how will this help pregnant women with heart disease?
A registry is an organized system that uses observational study methods to collect real-world uniform data (clinical and other). A registry evaluates specified outcomes for a population defined by a particular disease, condition, or exposure.
The results of the registry will be used to establish pregnancy and heart disease protocols and management processes that will reduce risk factors for our patients.
- How do I know if I have heart disease or if I am at risk for adverse outcomes due to my pregnancy?
If you are unsure about whether you might have an increased chance of developing heart disease, use the list of potential factors below to see how many apply to your lifestyle.
- Family history
- Diabetes
- Diet
- Smoking
- Weight
- Exercise
- Stress
If you think you might be affected by one or more of the risk factors mentioned above, consult your doctor about preventive measures that might work well for you or whether they recommend further testing. Whenever possible, it is highly recommended that you consult with your physician prior to conception to help identify your specific risk factors for heart disease.
- Are there currently any guidelines or references for women with heart disease during pregnancy that can guide management of the disease or help identify risks?
- Is birth control safe for me if I have heart disease?
Consult with your physician about the type of contraception that is safe for you.
- How do I enroll for the HOPE Study?
Patients are not allowed to enroll for the HOPE Study directly. If you are a patient who is interested, please speak with your cardiologist or OB-GYN who can contact the HOPE Study cardiology team.
If you are a physician interested in having patients participate in the HOPE Study, please note one of the criteria is that you must have both OB/MFM and cardiology coordinators at your site. While we have no partner site openings at this time, contact HOPEStudy@saintlukeskc.org or complete the Contact Us form to receive information about future partner participation opportunities.
