It's quite easy to register. The process is quick and simple. You sign up on the site with your name, email (a simple way for us to contact you), password, and birth date. You'll get a confirmation email to verify your account, sign off on an electronic consent and pledge page, and start taking surveys from the homepage.

Once you register, you'll be taken to the consent page. This is a research study, and the Children’s National Institutional Review Board (IRB) approves and regulates this research. These consent forms describe the study and exactly what your role will be.

The Congenital Heart Initiative prides itself on the steps we have taken to protect your personal information. The consent form will give you details about why we are asking certain questions and will let you know about your rights as a participant in this study. If you do not want your information shared, we want to make sure we hear you.

The first goal of this study is to figure out how ACHD patients are doing in their everyday lives. Our long-term goal is to create a platform where patients can receive information about their CHD, and where physicians and researchers can learn the best way to care for ACHD patients. In the future, other studies may be presented through the Initiative.

When you enroll in the Congenital Heart Initiative, you’ll be asked to complete an “eVisit”—several sections of easy-to-complete surveys—every 4 months. We focused the initial set of questions on understanding how ACHD patients are doing in real life. Based on your interests, you’ll receive some information about navigating the world of CHD. You’ll also receive special invitations periodically to participate in other studies that may be of interest to you (if there are studies that are of interest to you, you will be able to learn more through the consent processes). You can participate in as few or as many of these as you like. You’ll see all your study activities and special invitations on your homepage once you join the study.

Ideally, we want you to 1) answer the study's health-related questions, 2) check in regularly so we have your most up-to-date information, 3) participate in future studies and special invitations that you find interesting and want to contribute to, and 4) participate for at least 10 years so we can track how your health changes over time.

No one should have to navigate ACHD alone. Participating in this study will help clinicians and researchers better understand the needs of the ACHD patient population so they can then better support those patients and their families. We encourage everyone to participate in any way that they can in order to work towards improving the quality of life for all those affected by ACHD.

Each survey takes 5 minutes or less to answer.

We will ask you to give us an update every 4 months.

You will not be paid for taking part in this study.

No. We will not be providing any health advice or medical follow-up on any of the information you provide while participating in this study. Participation in this study is not, in any way, a substitute for professional medical advice, diagnosis, or treatment that your doctor or other healthcare provider may give you. Always ask the advice of your healthcare provider if you have any questions about your condition.

Heart Research Alliance and Children’s National Hospital.

Absolutely. We take this VERY seriously and will do everything we can to protect your information and keep it private and secure. Read the Privacy Policy here.

Absolutely not. We will never sell, rent, or lease your personal information, and we will never voluntarily share your information without your permission. Researchers who approach us about their studies will have to go through a screening process before we send you any information. Even then, we do not release any personal information without your permission.

To help us protect your privacy against involuntary disclosure of information, we have applied for a Certificate of Confidentiality from the United States Department of Health and Human Services (DHHS). This certificate protects against compulsory legal demands, such as court orders and subpoenas, for identifying information or identifying characteristics of a research participant. The Congenital Heart Initiative staff can't be forced to disclose study information that identifies you, even if ordered by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. The researchers will use the certificate to resist any demands for information that would identify you, except to prevent serious harm to yourself or others. We will, in all cases, take the necessary action, including reporting to authorities, to prevent serious harm to yourself or others. Read the Privacy Policy here.

By participating in the Congenital Heart Initiative study, you’ll be contributing to a national effort to fundamentally change the way both patients and clinicians understand ACHD and improve the overall quality of life of ACHD patients for the better. Knowledge is power, and with your help, we’ll be able to know more about this disease than ever before.

The Congenital Heart Initiative study follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All study data is transmitted, stored, and processed in a secure environment.

Once you've signed up for the study, you'll be assigned a personal research coordinator who you'll be able to contact by email or phone with any questions. They'll also email you important reminders and news about the study, if you wish. If you have questions about the study before you sign up, or if you have difficulty signing up, please email us at chdinitiative@eurekaplatform.org.

CHI-RON stands for Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care. In this study, parts of your medical history, such as your diagnosis, what type of cardiac tests you’ve had and number of hospitalizations you’ve had, are linked to the surveys you complete as part of the Congenital Heart Initiative. Only authorized members of the study team have access to this data. Through the CHI-RON study, we hope to learn more about how we can improve clinical care for patients like you.

The CHI-RON study is for adults with congenital heart disease who receive care at 12 participating care centers (see below). If you are eligible for CHI-RON, you will receive a unique link or code from your health care center to register. You will also need to sign an additional consent form called the HIPAA form that will be presented during the consent process. For more information, click here for an explainer video.

The Congenital Heart Initiative (CHI) is the first research registry for adults with congenital heart disease. The goals are to get to know the population of adults with congenital heart disease through a series of surveys about your health and well being. In addition, the goal is to create a tool for new research.

One of the first research studies that uses the CHI registry is called the CHI-RON study. It is a sub-study or a branch of the Congenital Heart Initiative that links your CHI surveys with some selected information from your medical records. Any adult with congenital heart disease can be part of the Congenital Heart Initiative, but to be a part of the CHI-RON study you have to be seen at one of the 12 participating care centers [see question below].

Yes, if you are seen at one of the 12 participating centers! You will be asked in one of your next surveys if you’re currently being seen at one of the participating CHI-RON centers. If you are eligible to participate in the study, you’ll have the opportunity to enroll. Just sign off on the additional consent form, called the HIPAA form. This will allow your center to release some of the information from your medical records so that our study team can link to your surveys.

Children's Hospital Colorado: Chi-ronACHDstudy@childrenscolorado.org, (720) 777-8956
Children's Hospital of Philadelphia: CHI-RON-ACHD@chop.edu, (215) 614-0090
Cincinnati Children's Hospital: chi-ronstudy@cchmc.org, (513) 803-1681
Columbia/NY Presbyterian: Cumc_registerychi@cumc.columbia.edu, (212) 305-6936
Mount Sinai: ACHDCHIRON@mountsinai.org, (212) 241-5453
Nationwide Children's Hospital: Victoria.Grant@nationwidechildrens.org, (614) 722-3587
Nicklaus Children's Hospital: Moya.Chang@Nicklaushealth.org, (786) 624-3529
NYU-Langone Health: ACHDCHIRON@nyulangone.org, (646) 618-2841
Ochsner Medical Center: heart_study@ochsner.org
University of Florida: CHI-RON@ufl.edu, (855) 698-0692
University of Miami: ssandhu3@med.miami.edu, (305) 397-8207
Weill-Cornell Medical Center: aia4008@med.cornell.edu, (646) 464-4238

While other centers are not currently able to join the CHI-RON study, we hope that many more research studies will be conducted under the umbrella of the Congenital Heart Initiative. If you think your care center should be involved in doing a research study alongside the CHI team, please be sure to tell them about the Congenital Heart Initiative and let them know they are welcome to contact us at chdinitiative@eurekaplatform.com.