FAQs
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It's quite easy to register. The process is quick and simple. Once registry recruitment is activate again, you’ll sign up on the site with your name, email (a simple way for us to contact you), password, and birth date. You'll receive a confirmation email to verify your account, sign off on an electronic consent and pledge page, and start taking surveys from the homepage.
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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.
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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.
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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.
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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.
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Each survey takes 5 minutes or less to answer.
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We will ask you to give us an update every 4 months.
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You will not be paid for taking part in this study.
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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.
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Heart Research Alliance and Children’s National Hospital.
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Absolutely. We take this VERY seriously and will do everything we can to protect your information and keep it private and secure.
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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.
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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.
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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.
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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.
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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 ACHDresearch@childrensnational.org.