Tag Archive for: adult congenital heart disease

photograph of a heart and stethoscope

Study offers quality of life insights for adults with congenital heart disease

photograph of a heart and stethoscope

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

For the first time, adults living with congenital heart disease (CHD) now have valuable insights into their long-term quality of life through data from the Congenital Heart Initiative (CHI). CHI is the nation’s first and largest patient-focused registry for adults with CHD and released its first study involving over 4,500 participants from all 50 states.

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

“Studies like this that leverage actual patient voices and experiences help us get a better sense of how to advise, support and treat people with CHD as they age,” says Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart program at Children’s National Hospital and senior author of the study. “Also, researchers get a clearer picture of the questions that need to be answered to make sure they have the best quality of life possible.”

The study also demonstrates two of the most successful models of current promising trends in clinical research:

  • The power of patient engagement throughout the research process, including design and implementation.
  • The impact of team science, highlighting the benefits of partnerships between patients, researchers and clinicians.

Key highlights include:

  • Many participants (88%) reported having one or more additional health issues (comorbidities).
    • 33% had arrhythmias (irregular heartbeat).
    • 35% had mood disorders, including depression or anxiety.
  • Quality of life is good or better for 84% of people who completed quality of life reporting measures, regardless of the type of congenital heart condition.
  • People with more complex congenital conditions were less likely to meet physical activity recommendations — an important finding with immediate impact.

Treatments for children born with congenital heart disease have improved so significantly in the last two decades that life expectancy continues to increase as well.

“There are now more adults living with congenital heart disease than there are children with CHD,” says Scott Leezer, patient co-principal investigator for the Congenital Heart Initiative registry and co-author of the study. “However, a significant gap remains in what we know about the adult CHD population. As an adult CHD patient, I was excited to contribute to creating this registry, bringing more answers to people like me who want to know how our unique hearts impact our bodies and quality of life over time.”

The authors note that the study’s findings and the registry data currently have a few limitations. First, the registry only contains patient-reported outcomes and no clinical data. The first sub-study of the CHI, the CHI-RON study, addresses this challenge by incorporating additional data sources for a subset of consenting CHI participants.

Additionally, recall bias, underlying neurocognitive challenges and survey fatigue, may have limited participation in the CHI to a smaller subset of adults with CHD. Efforts are underway to develop methods for people with congenital heart disease who have neurodevelopmental deficits or other disabilities to engage in the registry.  The CHI is temporarily closed to new registrants as the study team redesigns the study to better align with the needs of the community.

“We are grateful for everyone who joined this registry, answered survey questions and shared their experiences,” says Thomas Carton, Ph.D., chief data officer at Louisiana Public Health Institute and study co-author. “The CHI registry is a big step forward for adults with CHD, but also can serve as a model for how to bring together physicians, researchers and patients as active participants in care, research and advocacy.”

As the registry grows in the future, it will focus on increasing diversity of participants, developing additional partnerships with other organizations, continued innovation in data usage and improved community engagement, all with the goal of guiding future research that will ultimately improve quality of life for all adults with CHD.

Wayne Franklin, M.D., F.A.C.C.

Optimized congenital heart care ‘from twinkle to wrinkle’: Q&A with Wayne Franklin

Wayne J. Franklin, M.D., F.A.C.C., recently joined Children’s National Hospital as senior vice president of the Children’s National Heart Center. In that role, he oversees the full spectrum of heart care services which includes comprehensive care, as he puts it, from twinkle — when a child is barely more than a twinkle in their mother’s eye — to wrinkles — or throughout the lifespan.

During his first week, Dr. Franklin answered questions about his vision for the Children’s National Heart Center and told the team more about his clinical and research priorities.

Q: Why did you choose Children’s National?

A: Children’s National has such a long history of caring for the children and families in the community — over 150 years. This is a hospital taking fantastic care of patients now, but also planning for the future and the future of healthcare specifically. And I wanted to be part of that team. We know health care is ever changing and I want to be ahead of that, really providing the best care possible for today’s patients and about how to plan the ideal care for tomorrow’s patients.

I’m also excited to work with Children’s National President and CEO Michelle Riley-Brown. When I worked with her previously, I found out she’s a fantastic leader. I know she’s already started to do amazing things for Children’s National and the community.

Q: What is your vision for Children’s National Heart Center?

A: My vision for the heart center is to organize, coordinate and optimize all the different aspects of caring for children with heart problems.

It’s a complicated process. There’s intensive care in the hospital, ambulatory care in the clinic, acute care and emergency care. One of my roles is to coalesce all of those facets to provide total care for people from the prenatal period through birth and beyond into the teenage years, adulthood and even parenthood and grandparenthood.

I think we’re well-equipped to do that here at Children’s National.

As part of our commitment to providing the best care for patients and their families, we also plan to rely on our patient-family advisory council and our family-centered care approach. We take patient and family concerns to heart and want to continue bringing that information together with our world-class clinical care. That’s how we’ll be sure to provide great outcomes now and down the road.

Q: How is research a part of your vision for the Heart Center?

A: Research is critical to cardiac disease in children, especially in Washington, D.C. I think we’re very fortunate because people here at Children’s National are doing groundbreaking research and we work close to truly great scientific organizations like the George Washington University and the National Institutes of Health. Some of our heart center faculty actually work at the NIH too.

The top centers in the country, including Children’s National, are involved with cutting-edge innovation and research alongside clinical care and a big part of my job is to support these efforts to translate this science and help improve health outcomes for our patients.

Q: Why did you choose to work in the field of pediatric cardiology?  

A: While children with heart problems can become very sick, our advances in cardiac surgery, catheter interventions, cardiac intensive care and anesthesia allow us to work together to make them better reasonably quickly. To be able to provide them that care is really rewarding. Our team can really impact their health for a lifetime.

Q: What research are you, personally, interested in?

A: The research that I’m particularly interested in involves the full gamut of cardiac disease, from single ventricle physiology to pulmonary hypertension to fetal cardiology to women with heart disease. Fortunately, here at Children’s National there is a strong research infrastructure and some fantastic physician scientists.

Q: How did your interest in pediatric cardiology evolve into a specialty in adult congenital heart disease?  

A: When these kids grow up, they become adults with heart disease that is caused by their congenital heart lesions. It’s a different type of heart disease than an age-related heart attack, high cholesterol or stroke. I focused on this area many years ago because there are now more adults with congenital heart disease than children.

Currently, there is a need for more adult congenital heart disease specialists and there will continue to be need for even more in the future. I’m fortunate to join one of the best adult congenital heart programs in the country by coming to Children’s National.

Q: How do you spend your free time when you aren’t here at the hospital?

A: I work a lot but when I get time away from work, I love to spend my it with my family and I’m lucky to have a truly spectacular wife. In December, we’ll celebrate our 20th wedding anniversary and it’s been an extraordinary and exciting ride. We have two wonderful kids, both teenagers. Being a father myself has given me a different perspective about taking care of children throughout their lifetimes.

Q: What’s your favorite Washington, D.C., monument?

A: I always have to go back to the Lincoln Memorial. It was the first monument I saw on an 8th grade trip. I still remember the moment when I first walked up there…you see him. Incredible. He is literally larger than life, it’s just breathtaking. I think I’ll always remember that feeling.

two puzzle pieces, one with a heart and one with a brain

$2.1m award will fund studies for adults with CHD and neurodevelopmental disorders

two puzzle pieces, one with a heart and one with a brain

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease.

A first-of-its-kind study focused on including adults with congenital heart disease (CHD) and neurodevelopmental disabilities in patient-reported outcome research has been approved for $2.1 million in funding from the Patient-Centered Outcomes Research Institute (PCORI).

The study, Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient Centered Outcomes Research, is led by Anitha John, M.D., Ph.D., at Children’s National Hospital, together with partners from a range of academic, scientific and patient advocacy perspectives.

What this means

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease. In its current form, individuals with developmental disabilities are often excluded, as they are unable to complete the surveys independently.

Building upon Dr. John’s previous collaborations, the project features a shared leadership model with partners from across the United States.

Leading the study with Dr. John, William Bennett, M.D., (Indiana University) provides expertise in patient engagement research and big data and will serve as dual principal investigator (PI).

The project also utilizes the strengths and long-standing connections with PCORnet®, the National Patient-Centered Clinical Research Network, with Thomas Carton, Ph.D., (Louisiana Public Health Institute/REACHnet) serving as the PCORnet PI, Jamie Jackson, Ph.D., (Nationwide Children’s Hospital/PEDSnet) serving as a scientific PI with psychology expertise, Arwa Saidi, M.B.B.Ch., M.Ed., (University of Florida/OneFlorida) and Emily Ruckdeschel, M.D., (CHOP/PEDSnet) serving as recruiting site PIs.

The Adult Congenital Heart Association (ACHA) continues as part of the leadership team, represented by two parent co-PIs along with the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC), represented by Thomas Miller, D.O., (Maine Medical) and CURA strategies, represented by Scott Leezer.

The study was selected for support through a groundbreaking PCORI funding announcement focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research. Much has been learned in recent years about participatory research that seeks to involve the end users of study results, including patients, caregivers, clinicians and others, as partners in the research process. But there has been little systematic study about which engagement techniques are most effective.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children — it has been historically difficult to gather data on people with these conditions and to identify patient needs, especially in those with neurodevelopmental disabilities. Despite significant investment in cardiac neurodevelopmental programs across North America, CNOC has identified large gaps in current infrastructure to provide a continuum of neurodevelopmental care into adulthood.

Even more challenging is ensuring that the data is representative of the entire population of people living with these conditions. According to a 2024 Scientific Statement from the American Heart Association, “Although not every individual with congenital heart disease will have a developmental delay or disorder, neurodevelopmental deficits rank among the most enduring and impactful complications faced by individuals with complex congenital heart disease.”

Unfortunately, this critical subgroup remains underrepresented even in inclusive efforts such as CHI. Currently to be eligible for the CHI, participants must be able to complete the CHI’s patient-reported outcome tools independently. Individuals with CHD and neurodevelopmental disorders are often ineligible to participate.

The lack of engagement methods to effectively incorporate patients with developmental disabilities presents a major gap in the science of engagement research that hinders a full understanding of the long-term outcomes of all patients with CHD.

What’s next

This work to engage and capture the experiences of the most vulnerable adults with CHD will be an important enhancement to the CHI and will build upon the work of an ongoing sub-study of the CHI that uses PCORnet®, the National Patient-Centered Clinical Research Network, the CHI-RON study (PCORI RD-2020C2-20347).

The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

screenshot from Congenital Heart Initiative (CHI) Registry Participant Timeline

Congenital Heart Initiative beat recruitment goals, kicked off patient-engaged studies in year three

The Congenital Heart Initiative (CHI) is celebrating its third year as the first global patient-powered registry for adults with congenital heart disease (CHD). In 2023, the registry surpassed recruitment targets and launched a data intake process to allow researchers from around the world to submit proposals for patient-centered research and programs around the critical questions for adults with CHD who had their hearts repaired in childhood.

What it means

By recruiting over 4,600 participants in all 50 states and 37 countries, the CHI is now the largest patient-powered registry for adults with congenital heart disease. This is the first time researchers and clinicians have been able to access this type of robust data set to help them better understand and address the needs of people with CHD as they continue to age. Even better, the registry’s mechanisms allow for routine feedback and input about priorities directly from the growing patient population.

“Patient-centered research organizations, not providers or universities, have the greatest ability to lead this charge and lay the foundation for future breakthroughs. The inspiring efforts of all participants to date gives me hope that the next generation of advances is within reach,” says Matthew Lewis, M.D., an adult congenital heart specialist and CHI-RON site PI from Columbia University Medical Center.

An ongoing sub-study of CHI uses PCORnet®, the National Patient-Centered Clinical Research Network, to better understand how gaps in care impact the adult patient experience with CHD. The CHI-RON study (PCORI RD-2020C2-20347) fills in these gaps by exploring three distinct data types: patient-reported outcomes, health insurance claims and electronic health records. The effort is led by Children’s National Hospital and Louisiana Public Health Institute.

This year, CHI also launched some of its first studies, focused on pregnancy, health disparities and long-term health care follow-ups. The first academic manuscripts about these studies are expected to publish in the next year.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children in fact — it’s been historically difficult to gather data on these conditions and to identify patient needs.

As children born with CHD become adults, they have a lot of worry and uncertainty about their limitations and abilities to achieve what might be considered common adult milestones. The research made possible by this registry and the mechanisms to communicate findings to both the participants and the larger clinical community will make a big difference in quality of life and hope to provide more answers to these important questions.

The CHI related meetings have allowed a space where patients and researchers can come together to discuss research priorities.

“Once you go and look at things from the patient’s point of view, there is no going back. It is going to be something that will redefine you as a researcher and a provider,” says Rohan D’Souza, M.D., a maternal-fetal medicine specialist who is an active participant in a PCORI-funded maternal health consortium focused on reducing maternal morbidity and mortality in CHD patients (PCORI EACB-23293).

The patient benefit

Additionally, because people with CHD live all over the United States and the world, it can be hard for them to connect with each other to share common questions and experiences with clinicians and each other. The patient-driven registry engages participants and hopes to help make greater connections between people who live with CHD. A key registry partner, the Adult Congenital Heart Association (ACHA), helps create opportunities, such as virtual Coffee Hours, for people in the registry to weigh in on research priorities and share feedback about CHI’s work.

“The ACHA Cafe was born out of a need for connection,” says Aliza Marlin, who founded and organized the café project on behalf of the ACHA. “A virtual social hour, coffee optional, gave the ACHD community a safe space to come together. Using it as a conduit to the Congenital Heart Initiative gave us an empowered voice in our own futures. It’s the perfect example of social connection leading to transformative possibilities.”

What’s next

Anitha John, M.D., medical director of the Washington Adult Congenital Heart Program and an adult congenital cardiologist at Children’s National Hospital who leads CHI, says that the future looks bright for the registry and the vital information it can provide.

The new data intake process launched this year, she adds, gives anyone with an interest the ability to submit ideas for new grants, projects and studies. The team will also continue to engage with registry participants, researchers and the centers who provide care for people with CHD, all with the goal of finding more answers to the key questions about how to accomplish specific goals, such as improving mental health, the health care transition and overall quality of life for adults with CHD. For more information on how to get involved, please email ACHDresearch@childrensnational.org.

Map showing CHI Registry sign-ups through December 2022

Congenital Heart Initiative celebrates global reach in first two years

The first patient-powered registry for adults living with congenital heart disease (CHD) — the Congential Heart Initiative (CHI) — celebrates a major milestone this month. In the two years since it was launched in December 2020, the registry has enrolled more than 3,227 adults with CHD from all 50 states and 28 countries.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children in fact — it’s been historically difficult to gather data on these conditions and to identify patient needs.

“We developed this registry together with numerous patients and providers so it could become a platform for increasing our knowledge and improving care,” says Anitha John, M.D., medical director of the Washington Adult Congenital Heart Program and an adult congenital cardiologist at Children’s National Hospital, who helped drive the registry’s creation. “We want it to become a resource for patients and researchers, a place where they can learn more about what it means for adults who had their hearts repaired in childhood to live a long, healthy life.”

The patient benefit

As the treatments for children with CHDs have improved, people born with them are living longer and longer. That means that as they become adults, they have a lot of worry and uncertainty about their limitations and abilities to achieve what might be considered common adult milestones.

“Over the past two years, more than 3,000 adult congenital heart disease (ACHD) patients from around the world, including myself, have worked to support ACHD research by participating in the Congenital Heart Initiative (CHI),” says Scott Leezer, a single-ventricle heart defect patient and co-leader of research and advocacy for the Initiative. “This selfless and simple effort has produced an investment in improving our collective understanding of adult patients living with CHD. We hope these investments will pay dividends in helping guide new research strategies for future generations of CHD patients.”

Participants in the registry receive regular newsletters, highlighting findings and providing access to patient specific resources including content from the Adult Congenital Heart Association (ACHA), a key partner. The ACHA collaboration has also given registry participants the opportunity to interact with other people – a key request identified as important based on input from people who have already registered.

What’s unique

“There is no ’one-size-fits-all’ answer for adults with CHD,” Dr. John adds.

“While other CHD registries exist, they are provider-based and not patient-powered,” said John. “The CHI registry is driven by patients, supporting research but also providing information based on what is important according to the people with CHD themselves.”

What’s next

A sub-study of the CHI will use PCORnet®, the National Patient-Centered Clinical Research Network, to better understand how gaps in care impact the adult patient experience with CHD. The CHI-RON study, which stands for Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care, will be the first of its kind to fill in these knowledge gaps by exploring three distinct types of data at once: patient reported outcomes, health insurance claims and electronic health records (EHR). The effort is led by Children’s National and Louisiana Public Health Institute.

“PCORnet is a fantastic resource to help us fully understand the impact of gaps in CHD care,” said Tom Carton, dual-principal investigator of CHI-RON and chief data officer at the Louisiana Public Health Institute. “It is essentially turbo-charging our patient-reported data with two additional layers of insights from claims and EHRs, unlocking answers that would be impossible to achieve in isolation.”

In terms of research, the CHI now has enough participants to allow researchers to complete some important studies about pregnancy, mental health and long-term health care follow ups, all of which will kick off within the next year. The research teams hope to engage centers across the United States to better determine the needs of individual ACHD centers and to understand how the CHI can help with these needs.

Anitha John

Youth with heart defects need a smooth transition to age-appropriate heart care, says AHA

Anitha John

Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart Program (WACH) at Children’s National Hospital and incoming chair of the AHA Young Hearts council, served as lead author on the statement, which provides the latest evidence-based best practices for a successful transition from pediatric care to adult care.

The American Heart Association (AHA) issued a scientific statement capturing the best practices for helping children with congenital heart disease successfully transition to adulthood and receive health care tailored to their needs as they continue to age. Ensuring a smooth and supported transition and establishing relationships with these young patients as they grow into adults is key to maintaining their engagement and connection to health care decisions that will improve their long-term health and well-being.

Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart Program (WACH) at Children’s National Hospital and incoming chair of the AHA Young Hearts council, served as lead author on the statement, which provides the latest evidence-based best practices for a successful transition from pediatric care to adult care. This work is critical given that today, thanks to the tremendous advances in care and treatment of congenital heart defects in the last two decades, there are more adults living with congenital heart conditions than children.

What this means

The AHA describes a scientific statement as an “expert analysis of current research” that “can inform future care guidelines.” This scientific statement demonstrates the scientific evidence supporting what adult congenital heart specialists have advised for years—that making sure children with congenital heart defects continue to stay engaged in their care and actively seek out health care specialized for them as they grow through adolescence and into adulthood is critical. Keeping that connection plays a pivotal role in their overall quality of life as they age.

Why it matters

Treatments and care for children with congenital heart defects has improved so greatly that, according to the AHA, “most people born with heart defects today, including those with complex heart conditions, survive past childhood and become adults.” But the same care they received as children is not enough to address their needs as adults. Adult-oriented congenital heart care can be the difference between a long and healthy life or continued health challenges and dangerous side effects. Adults with congenital heart conditions should seek out care that serves them best, and it should be accessible to everyone who needs it.

By issuing this updated scientific statement, the AHA is broadcasting the important take home message that adults with congenital heart disease and their care providers need (and should seek) access to an adult-focused program with expertise in caring for the unique challenges they face. Establishing that connection at the transition point from adolescence to adulthood can set the stage for long term engagement and health.

Children’s National Hospital leads the way

As director of the WACH program at Children’s National, Dr. John is one of the nation’s experts in care for adults living with congenital heart disease. She also leads significant patient-centered research efforts focused on understanding barriers to care and other challenges faced by these adult heart patients, including serving as co-principal investigator on one of the largest patient-centered studies of adults living with congenital heart disease, supported by the Patient-Centered Outcomes Research Institute (PCORI). The findings from these studies will help fuel further recommendations and guidelines that will improve the standards of care for these patients.

Read the AHA News overview of the Scientific Statement.

Read the Scientific Statement from the Journal of the American Heart Association.

doctor listening to patients heart

Children’s National leads patient-centered study of adult congenital heart disease

doctor listening to patients heart

The team will work with the 14 research institutions across the United States to collect data and then examine rates of complications or associated illnesses, as well as how adult patients have accessed health care throughout their lives.

Investigators at Children’s National Hospital and the Louisiana Public Health Institute are leading a $4.9 million research effort to study how gaps in health care affect the health and well-being of adults with congenital heart disease (CHD), supported by the Patient-Centered Outcomes Research Institute (PCORI).

The research is led by Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital and Thomas Carton, Ph.D., chief data officer at the Louisiana Public Health Institute, as well as two patient co-investigators, Ruth Phillippi and Scott Leezer. The study leads also include representatives from the Adult Congenital Heart Association and Anu Agarwal, M.D., who represents the University of California – San Francisco (UCSF).

“With the increasing number of adult patients with CHD, it is important for us to understand how current recommended practices influence patient outcomes,” says Dr. John. “This project will guide us on how to best care for our patients, not just through childhood, but across their entire lifespans. Most importantly, this project will involve direct outreach to patients, incorporating patient reported outcomes as a measure of long-term outcomes.”

Together, the team will work with the 14 research institutions across the United States to collect data and then examine rates of complications or associated illnesses, as well as how adult patients have accessed health care throughout their lives. The findings may help predict which patients are at greater risk of falling out of routine health care, and when these gaps in care are likely to occur across a patient’s lifespan. The study will also correlate findings with how patients are actually feeling in their everyday lives.

The 14 participating institutions are:

  • Ochsner Health
  • Children’s Hospital of Philadelphia
  • Icahn School of Medicine at Mount Sinai
  • University of California – San Francisco
  • Nationwide Children’s Hospital
  • Duke University Health System
  • NYU Grossman School of Medicine
  • Nicklaus Children’s Hospital
  • Children’s Hospital Colorado
  • University of Miami
  • Columbia University Irving Medical Center
  • Cincinnati Children’s Hospital Medical Center
  • Weill Cornell Medical College
  • University of Florida

“This unprecedented look at the health of adults living with congenital heart disease allows us to get a full spectrum view by combining clinical data with patient-reported health data,” says Dr. Carton.

The first patient-powered registry for adults with CHD — the Congenital Heart Initiative (CHI) is a key component of this research. Launched with seed funding from Children’s National and the Heart Research Alliance at UCSF, the CHI is led by Dr. John and her team at Children’s National in addition to a broad multi-stakeholder advisory board, including patients. The CHI was co-developed with input from patients, clinicians and researchers and continues to involve these voices in the advancement of the registry. Patients who are recruited for this research will participate via enrollment in the registry, which will allow researchers to ask patients directly about health, wellness and any specific barriers to care. Learn more about CHI’s progress in their first annual report.

“Patients, like myself, are charting a new course and we desire answers to significant questions, as do our providers, about impact of lifelong specialized care, along with improved understanding of the quality-of-life patients experience,” says Leezer. “This project represents a huge step forward towards obtaining answers for the adult CHD community.”

The study also draws on the vast health data resources of PCORnet®, the National Patient-Centered Clinical Research Institute, to conduct this study more efficiently. With health records for 66 million patients available for observational studies, the PCORI-funded PCORnet provides vast scale to power research on conditions affecting even small numbers of people.

“We are confident that this research will yield critical learnings that will empower the community, align resources and spur future innovation to better meet the specialized care needs of this emerging population,” says Mark Roeder, president and chief executive officer for the Adult Congenital Heart Association.

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians and other health care decision makers with the evidence-based information needed to make better-informed health care choices.

stethoscope and stress ball in heart shape

First registry specifically for adult congenital heart disease launches

stethoscope and stress ball in heart shape

Although nearly 2 million adults in the United States are living with a congenital heart defect, it’s been historically difficult to gather data on these conditions and to identify patient needs. To address this challenge, Children’s National Hospital and the Heart Research Alliance, in partnership with the Adult Congenital Heart Association and University of California San Francisco, developed the Congenital Heart Initiative, a registry specifically for adult congenital heart disease (ACHD) patients.

The Congenital Heart Initiative aims to:

  • Understand how to improve the quality of life for adults with congenital heart defects
  • Improve our understanding of the ACHD population for patients, providers and researchers
  • Inform future research projects of needs within the ACHD community
  • Spur innovation within congenital heart disease treatment
  • Fundamentally change the way America understands and cares for ACHD patients

The registry will collect data from brief surveys sent to enrollees every six months, which will be used to gain a deeper understanding of the experiences of ACHD patients. By reshaping the way that ACHD is understood by both patients and clinicians, the registry can improve the lives and futures of adults living with congenital heart defects.

“Our long-term goal is to develop a platform for everyone in the community to come together and learn more about CHD,” says Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National, who led development of this initiative. “We hope that this effort will be the start of a resource to allow patients and researchers to come together and learn more, together, about congenital heart disease.”

Children’s National Hospital is joined in this effort by six other U.S. organizations, including:

  • University of California San Francisco
  • Heart Research Alliance (formerly the Health eHeart Alliance)
  • Adult Congenital Heart Disease Cause Group
  • Eureka
  • Adult Congenital Heart Association (ACHA)
  • Alliance for Adult Research in Congenital Cardiology (AARCC)

Several other organizations serve as advisors to the initiative, including:

  • National Heart, Lung, and Blood Institute (NHLBI)
  • Centers for Disease Control and Prevention (CDC)
  • American College of Cardiology, Adult Congenital & Pediatric Cardiology (ACPC) Section
  • Cardiac Networks United

People with congenital heart disease who are 18 years of age or older may enroll in the registry and volunteer to participate in research conducted within the initiative. Learn more at: https://chi.eurekaplatform.org.

Dr. Anitha John, third from right, director of the Washington Adult Congenital Heart Program, hosts the eighth-annual “Adult Congenital Heart Disease in the 21st Century” conference

CME spotlight: Treating adult congenital heart disease

Dr. Anitha John, third from right, director of the Washington Adult Congenital Heart Program, hosts the eighth-annual “Adult Congenital Heart Disease in the 21st Century” conference

Dr. Anitha John, third from right, director of the Washington Adult Congenital Heart Program, hosts the eighth-annual “Adult Congenital Heart Disease in the 21st Century” conference, which takes place Oct. 4-5, 2019.

A two-day continuing medical education (CME) conference for physicians and clinicians treating patients with adult congenital heart disease (ACHD) takes place Oct. 4-5, 2019, at the Bethesda Marriott in Bethesda, Maryland.

The eighth-annual conference, “Adult Congenital Heart Disease in the 21st Century,” hosted by Children’s National Health System and MedStar Washington Hospital Center provides a comprehensive review of the evaluation, diagnosis and management of ACHD, including guidelines to help ACHD patients manage a healthy pregnancy and clinical guidance about the progression of congenital heart disease (CHD) treatment from adolescence through adulthood.

Two tracks accommodate these themes, with the first focusing on a multidisciplinary approach clinicians can use to help ACHD patients assess risks for pregnancy complications, while planning and managing a healthy pregnancy, with input from cardiologists, anesthesiologists and maternal fetal medicine specialists. The second focuses on cardiac defects, starting with anatomical cardiac lessons with 3D heart models, then moves to imaging review, examining echocardiograms and MRI’s, and ends with clinical management review.

“This conference brings the best science and the most innovative approaches to treatment with questions doctors receive in the exam room,” says Anitha John, M.D., Ph.D., the conference organizer and director of the Washington Adult Congenital Heart program at Children’s National. “We’re inviting patients to join the afternoon of the second day of the CME conference again this year to support shared knowledge of these concepts, which supports lifelong treatment and education.”

Dr. John planned this year’s conference with the November 6 ACHD board exams in mind, integrating topics that will appear on the third ACHD certification exam issued by the American Board of Internal Medicine.

At this year’s CME conference, more than a dozen faculty members, including several physicians and nurses from Children’s National, will guide lectures to help attendees meet 13 objectives, from understanding the prevalence of congenital heart disease and its complications to learning about when surgical interventions and referrals to specialists are necessary.

Attendees will review new and innovative PAH therapies, mechanical support therapies, catheter-based interventional procedures and appraise the use of pacemaker and defibrillator therapy among adults with CHD.

Patients and families attending the patient sessions, held from 12:30 to 3:45 p.m. on Saturday, October 5, have a chance to participate in three sessions that support the medical and social needs of ACHD patients. Topics range from workshops that address the neurodevelopment and psychosocial factors of living with a congenital heart defect to sessions that focus on reproductive options for patients and personalized lifestyle recommendations, including fitness and exercise guidelines.

“To support cardiovascular health throughout the lifespan, it helps to educate patients about their heart’s structure and unique needs,” notes Dr. John. “We want to spark a dialogue now and have future conversations with patients, especially while they are young.”

The American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines updated ACHD treatment recommendations in August 2018, the first time in 10 years, and many of these guidelines manifest as panel discussions and interactive lectures presented at the 2019 Adult Congenital Heart Disease in the 21st Century conference.

Attendees can receive up to 12.5 credits from the Accreditation Council for Continuing Medical Education, the Accreditation Council for Pharmacy Education, the American Nurses Credentialing Center and the American Academy of PAs.

Those interested in starting their own ACHD program can attend an evening symposium, entitled “ACHD Program Building 101,” hosted by representatives from the Mid-Atlantic ACHD Regional Group. Topics in the six-session panel range from managing ACHD patients in a pediatric hospital setting to the role of clinical nurse coordinators in ACHD care.

To learn more about or to register for the conference, visit CE.MedStarHealth.org/ACHD. You can also listen to an interview with Dr. Anitha John about the upcoming Adult Congenital Heart Disease (ACHD) conference.