Frequently asked questions

Any individual, living or deceased, who has experienced unexplained or undiagnosed heart rhythm disorders can participate in iHOPE-Kids. This includes those who have experienced unexpected cardiac events, regardless of whether a specific diagnosis has been made.

Yes, individuals who have been diagnosed with an arrhythmia can still enroll in iHOPE-Kids. Our registry includes both diagnosed and undiagnosed cases, as it helps researchers gain a more comprehensive understanding of heart rhythm disorders.

For families who have lost a loved one and don't have a clear explanation for their death, particularly in cases of sudden or unexpected events, there is a high possibility that your family member may be eligible for biobank storage.

No, participation in research is not required to store DNA in our biobank. You can store the DNA without agreeing to research participation, and your consent will determine how the sample is used.

Yes, adult patients can enroll in iHOPE-Kids. Data from adult patients is also valuable in understanding genetic patterns and the progression of arrhythmias.

Yes, iHOPE-Kids is open to participants from all countries. We welcome patients from around the world to contribute to our understanding of heart rhythm disorders.

Enrolling in iHOPE-Kids involves completing a consent form, providing basic medical information, and submitting a DNA sample. Our team will guide you through each step to ensure the process is easy and clear.

Participation in iHOPE-Kids research carries minimal risks. The primary risk involves privacy, but we implement strong security measures to protect your data and maintain confidentiality. Additionally, emotional considerations may arise when discussing or handling sensitive health information. The potential benefits of participating include contributing to research that could lead to earlier diagnoses, better treatments, and a deeper understanding of heart rhythm disorders. While direct personal benefits are not guaranteed, your participation may help improve outcomes for future patients and families facing similar conditions.

Yes, as the legal owner or legal guardian can request its return at any time from our biobank.

Once you enroll, we will provide you with detailed instructions on how to collect and send the DNA sample. The samples are stored in a lab at Texas Children's Hospital in Houston. We will also give you the address of our biobank facility and any necessary shipping information to ensure the sample arrives safely.

We primarily need DNA from the individual with the heart condition. However, in some cases, DNA from family members may be requested to understand the genetic inheritance patterns better.

No, your insurance company will not be informed of any findings from iHOPE-Kids. We follow strict confidentiality protocols to protect your privacy, and any medical or genetic discoveries remain private unless you choose to share them.

Your DNA will be stored indefinitely unless you choose to withdraw from the program.

We adhere to strict privacy and confidentiality protocols to protect your information. Only authorized researchers will have access.

You can withdraw from iHOPE-Kids at any time. Upon withdrawal, we will either destroy your DNA sample or return it to you based on your preference. Your data will also be removed from any ongoing research.

Yes, you can update your consent preferences at any time. Simply contact our support team, and we will make the necessary changes to ensure your participation aligns with your wishes.

No, your DNA and medical information will only be used for research focused on cardiac arrhythmias and related conditions.

You will be notified of any significant findings that are relevant to your family. Our team will contact you directly to share updates and results that could impact medical care.

You can contact our support team at ihopekids@bcm.edu or visit our website for more information. We're here to answer any questions you may have.

Absolutely! We value your feedback and use it to improve the program. You can share your experience through our website or by contacting our support team directly.