The ACHD Roundtable

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The ACHD Roundtable

We are a collaborative of stakeholders working to advance PCOR in ACHD in the South-Central US.

We are a collaborative of patients, families, and stakeholders working together to advance patient-centered outcomes research (PCOR) in adult congenital heart disease (ACHD) in the South-Central United States. We believe engaging patients, families, and stakeholders with firsthand experience of conditions can produce more patient-centered, practical, and trustworthy research. Ultimately, this can lead to greater use of research results by patients and the broader healthcare community, helping people make better-informed healthcare decisions and improving the lives of patients living with ACHD. This collaborative is a diverse group of stakeholders from Texas, Oklahoma, and Louisiana. These stakeholders represent the cultural diversity and underserved ACHD care areas typical in the South-Central US. These stakeholders are building a sustainable community that will have the capacity to act as equal research partners to identify, participate in, develop, lead, and disseminate PCOR and comparative clinical effectiveness research (CER). The project, Building Capacity for PCOR through a South-Central US ACHD Stakeholder Roundtable, was funded through a PCORI Eugene Washington PCORI Engagement Award (19633-HMRI).

09/29/2025

This World Heart Day, we want to celebrate the heart of the ACHD Roundtable—our incredible congenital heart disease patients. Their voices, experiences, and ideas guide every conversation and shape the research questions that truly matter. Today and every day, we thank them for sharing their stories and leading the way toward better care and brighter futures.

09/12/2025

We’re excited to roll up our sleeves this weekend and dive into creating research questions that matter most to ACHD patients in the South Central U.S. 💙 See you soon!

07/15/2025

Meet Suhas

Suhas joined the ACHD Roundtable because he was inspired by the opportunity to work alongside patients, physicians, and researchers to improve access to ACHD care from the ground up.

“Patient-centered research is important to me because the voices of those directly impacted by care are essential. Real change happens when patients are involved in shaping the path forward.”

Suhas is especially passionate about affordability and insurance:
“CHD care is lifelong and complex, often leading to high costs and gaps in coverage. We need to keep these issues front and center to create more equitable access for everyone in the ACHD community.”

We’re grateful to have Suhas at the table. Bringing lived experience, insight, and determination to help move ACHD care forward.

07/11/2025

What affects lifelong care for people with CHD?

Members of the ACHD Roundtable are exploring big questions about what really impacts access to lifelong, specialized congenital heart care. That includes everything from insurance and mental health to life changes like starting college or moving across the country.

We may not have one clear answer, but we’re beginning to explore this topic so we can build thoughtful, meaningful research questions around it

Which of these do you think has the biggest impact on staying in lifelong CHD care?
(Pick one below!)

Insurance & cost

Access to specialists

Life transitions (college, jobs, moving)

Mental health & burnout

07/09/2025

Our hearts are with everyone in Texas impacted by the devastating floods. This tragedy hits especially close to home as some of our ACHD Roundtable members call Texas home.

It’s one thing to see a disaster on the news, and another when it touches the lives of those in your own community. Please know we are thinking of you, holding space for whatever you’re feeling, and ready to support however we can. If you’re safe and able, check in on someone. Know that you are not alone.

06/26/2025

Let’s talk about it: Insurance and CHD.

If you’re living with congenital heart disease, you already know that insurance and affordability are constant hurdles. Whether it’s getting coverage for specialized care, paying for ongoing treatment, or just navigating the system… we’ve all faced it in one way or another.

That’s why one of the research questions we’re trying to develop is focused on affordability and insurance access for adults with CHD.

We are curious about your experience:
👉 What do you think affects someone’s ability to get the care or coverage they need with adults who have congenital heart disease?

Drop your thoughts or experiences in the comments 👇

06/23/2025

Meet Charlotte – CHD advocate, transplant survivor, and valued ACHD Roundtable Member. Charlotte brings a unique perspective to the team. Not only is she a patient but she is also a licensed clinical counselor.

Originally diagnosed in 1981 with cardiomyopathy, Charlotte was later diagnosed with Congenital Non-Compaction of the Left Myocardium at age 21. She believes she may be the first person to receive a heart transplant with this diagnosis.

Now, 22 years post-transplant, Charlotte brings powerful lived experience to the table as she helps shape research questions focused on improving the lives of adults with CHD.

"I believe it is essential that the voices of those directly impacted by research are included in the process. Their lived experiences should have a meaningful place at the table."

Charlotte, we’re grateful for your voice, your story, and your dedication to this work.

06/18/2025

What impacts the mental health of someone living with congenital heart disease (CHD)?

We’re working on building meaningful research questions around mental health and the ACHD community—across the South Central U.S.—because we know mental health support is essential to whole-person care.

But we also know mental health challenges and experiences don’t stop at state lines. They happen everywhere, and they look different for everyone.

So we want to hear from you:
What factors, positive or negative, have impacted your mental health as someone living with CHD?
👇 Drop your thoughts in the comments. Your voice matters.

06/09/2025

“It’s important to look into how we can make ACHD treatment more affordable and how we can eliminate the causes of these defects in future newborns.”

Deependra joined the Roundtable as a CHD patient who has a single ventricle, transposition of the greater arteries, and a moderately dilated LV with a large ventricular septal defect. He shares his personal health struggles and the coping strategies he’s developed, with the hope that others can learn, grow, and feel less alone in their journey.

He’s also using his voice to spotlight urgent issues in adult congenital heart care. From the rising cost of treatment and shifting insurance policies to the need for greater access to experimental options and more affordable post-operative support.

We’re so grateful for the lived experience and advocacy he brings to the table.

Want to be part of the conversation? Join us in shaping the future of ACHD research. If you are located in Texas, Louisiana, or Oklahoma, click the link in our bio or DM us. We can't wait to talk to you!

05/30/2025

Not every topic made the “Top 3” but that doesn’t mean they’re not top of mind for many in the ACHD community.

From navigating care transitions and aging with CHD, to patient advocacy, family planning, and other health risks — these are real concerns for adults with congenital heart disease in the South Central U.S.

Which of these matters most to you right now?

Drop your thoughts in the comments:

🔹 Care transitions
🔹 Aging with CHD
🔹 Patient advocacy
🔹 Family planning/pregnancy
🔹 Other health issues and risks

Let’s keep the conversation going.

05/26/2025

Insurance and affordability.

For adults with CHD, navigating care often means navigating a maze of high copays, surprise bills, limited provider options, and insurance denials. It’s overwhelming and it’s holding people back from the care they deserve.

That’s why affordability and insurance rose to the top as a key research priority in our ACHD Roundtable. Now, we’re working alongside patients, families, and experts to craft a research question that gets to the heart of the problem.

Let’s find out what needs to change and how we can make care more accessible for adults with CHD in the South Central U.S.

05/23/2025

Mental health matters. Especially when you're living with congenital heart disease.

CHD isn't just about managing your heart. It's about navigating the stress, anxiety, and emotional toll that can come with it.

That’s why mental health was the second most important research topic identified in our ACHD Roundtable. We’re teaming up with licensed therapists, psychiatrists, patients, and families to create a research question that truly reflects the lived experience.

We can’t wait to see what we uncover together.

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