Fetal Brain MRIs as a Predictor of Late Neurodevelopmental Outcome in Congenital Heart Disease

Fetal Brain MRIs as a Predictor of Late Neurodevelopmental Outcome in Congenital Heart Disease is sponsored by The Children's Heart Foundation. This study aims to explore how MRIs might predict neurodevelopmental outcomes for babies with congenital heart defects (CHDs).

* Medical Advisory Council * Diversity, Equity, & Belonging * Sponsorship Opportunities * Independent Research Awards * Scholarship for Researchers Committed to Advancing CHD Research * AHA/CHF Congenital Heart Defect Research Awards * Medical Advisory Council * Diversity, Equity, & Belonging * Sponsorship Opportunities * Independent Research Awards * Scholarship for Researchers Committed to Advancing CHD Research * AHA/CHF Congenital Heart Defect Research Awards Use the up and down arrows to select a result.

Press enter to go to the selected search result. Touch device users can use touch and swipe gestures. * Medical Advisory Council * Diversity, Equity, & Belonging * Sponsorship Opportunities * Independent Research Awards * Scholarship for Researchers Committed to Advancing CHD Research * AHA/CHF Congenital Heart Defect Research Awards Use the up and down arrows to select a result.

Press enter to go to the selected search result. Touch device users can use touch and swipe gestures. * Medical Advisory Council * Diversity, Equity, & Belonging * Sponsorship Opportunities * Independent Research Awards * Scholarship for Researchers Committed to Advancing CHD Research * AHA/CHF Congenital Heart Defect Research Awards Northbrook, IL 60062-1500 info@childrensheartfoundation.

org #### The Children’s Heart Foundation funds research on how MRIs may predict neurodevelopmental outcomes for babies with CHDs How might MRIs predict neurodevelopmental outcomes for babies with CHDs? This is a topic Caitlin K. Rollins, MD, SM, from Boston Children’s Hospital wants to explore through her study: _**Fetal Brain MRIs as a Predictor of Late Neurodevelopmental Outcome in Congenital Heart Disease.

**_ While medical and surgical advances have dramatically improved survival rates for children born with congenital heart defects (CHDs), many kids still face significant neurodevelopmental disabilities. Attention deficits and challenges with social cognition and executive functioning skills are common. By adolescence, at least two out of every three children with critical CHDs require developmental or special education services.

As they reach adulthood, disabilities may limit educational and employment opportunities and severely impact quality of life. Postnatal medical and surgical factors alone cannot predict which babies will face significant neurodevelopmental challenges. Abnormal brain development in utero likely contributes to neurodevelopmental disability in children with CHDs.

Even before surgery, the brains of babies with CHDs appear less mature than the brains of babies without CHDs. The fetal brain is organized into layers of tissue called the transient fetal brain compartments. These compartments generate neurons, create connections throughout the brain, and establish the organizational structure of the brain which persists long after birth.

Cells in these compartments are particularly vulnerable to low oxygen levels. Since fetuses with CHDs often have low oxygen delivery to the brain, cells in the transient fetal brain compartments are at risk. Damage to these cells could impact long-term brain structure and function.

The association between fetal brain health and long-term neurodevelopment in CHDs is a critical knowledge gap. Beginning in 2014, Dr. Rollins and her group created a cohort of 147 children—some with and some without CHDs—who were enrolled in a fetal brain MRI study before birth.

Their detailed database includes fetal brain MRI measurements, sociodemographic and medical data before and after birth, and two-year neurodevelopmental outcomes for each child. So far, Dr. Rollins and her team have demonstrated two key findings in our cohort. * Transient fetal brain compartments were smaller in the fetuses with CHDs than in control fetuses without CHDs.

* Fetal brain size predicted neurodevelopmental outcome at two years of age. It is not known whether the association between fetal brain size and early development is transient, or if abnormal fetal brain structure has lasting neurodevelopmental implications for these children.

With funding from The Children’s Heart Foundation, Dr. Rollins and her team will now complete the first long-term follow-up study of children with CHDs who underwent fetal brain MRIs. They will also acquire neuroimaging and neurodevelopmental data of these kids who are now school-age.

Follow-up at school-age is critical, since this is when detailed neuropsychological evaluation is first possible, and when neuropsychological assessments can predict long-term functioning. In addition, the vast majority of brain growth has occurred by school-age, and connections in the brain are well established.

For Dr. Rollins and her team, their overarching hypothesis is that abnormal fetal brain development is associated with long-term differences in brain structure and neurodevelopmental functioning in CHDs. If true, this hypothesis would suggest that fetal therapies to protect the brain could improve long-term outcomes.

The proposed study will be the first to evaluate whether fetal brain MRIs can predict long-term neurodevelopmental outcome in CHDs. This data is urgently needed to optimize ongoing trials of fetal therapies to protect the brain in babies with CHDs. Through this research, investigators will: 1.

gain insight into mechanisms of neurodevelopmental impairment in CHDs, 2. identify the patients who are most at risk of adverse outcomes and appropriate for clinical trials of fetal neuroprotective therapy, and 3. establish early biomarkers of long-term outcome.

This single-site study will provide critical proof of concept data as the basis for a larger multi-site study harnessing fetal brain MRI cohorts throughout existing pediatric cardiology networks. Stay informed to help make an impact. Please leave this field empty The Children's Heart Foundation Northbrook, IL 60062-1500 info@childrensheartfoundation.

org Northbrook, IL 60062-1500 info@childrensheartfoundation. org 1. **What Information Do We Collect?

** When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website. 2.

**Personal Information You Choose to Provide** We may request that you voluntarily supply us with personal information, including your email address, postal address, home or work telephone number and other personal information for such purposes as correspondence, placing an order, requesting an estimate, or participating in online surveys.

If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. We provide the same protections for these electronic communications that we employ in the maintenance of information received by mail and telephone. 4.

**How Do We Use the Information That You Provide to Us? ** Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers.

Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users.

You may at any time to notify us of your desire not to receive these offers. 7. **Notice of New Services and Changes** Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable.

As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request. 8. **How Do We Secure Information Transmissions?

** When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website. Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information.

For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email. 9. **How Do We Protect Your Information?

** Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction.

Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information. Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information.

In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions. 10. **How Can You Access and Correct Your Information?

** You may request access to all your personally identifiable information that we collect online and maintain in our database by emailing us using the contact form provided to you within the site structure of our website. 12. **What About Legally Compelled Disclosure of Information?

** We may disclose information when legally compelled to do so, in other words, when we, in good faith, believe that the law requires it or for the protection of our legal rights. 13. **Permission to Use of Materials** The right to download and store or output the materials in our website is granted for the user's personal use only, and materials may not be reproduced in any edited form.

Any other reproduction, transmission, performance, display or editing of these materials by any means mechanical or electronic without our express written permission is strictly prohibited. Users wishing to obtain permission to reprint or reproduce any materials appearing on this site may contact us directly. 14.

**The right to erasure (right to be forgotten)** You have the right to request the removal or deletion of your personal data if there is no compelling reason for us to continue processing it. If you would like your personal data deleted, please contact us at info@childrensheartfoundation.

org or call (847) 634-6474 _When using our website and submitting personal data to us, you may have certain rights under the General Data Protection Regulation (GDPR) and other laws. Depending on the legal basis for processing your personal data, you may have some or all of the following rights:_ **The right to be informed –**You have the right to be informed about the personal data we collect from you, and how we process it.

**The right of access –**You have the right to get confirmation that your personal data is being processed and have the ability to access your personal data. **The right to rectification –**You have the right to have your personal data corrected if it is inaccurate or incomplete.

**The right to erasure (right to be forgotten) –**You have the right to request the removal or deletion of your personal data if there is no compelling reason for us to continue processing it. **The right to restrict processing –**You have a right to ‘block’ or restrict the processing of your personal data. When your personal data is restricted, we are permitted to store your data, but not to process it further.

**The right to data portability –**You have the right to request and get your personal data that you provided to us and use it for your own purposes. We will provide your data to you within 30 days of your request. To request your personal data, please contact us using the information at the top of this privacy notice.

**The right to object –**You have the right to object to us processing your personal data for the following reasons: -Processing was based on legitimate interests or the performance of a task in the public interest/exercise of official authority (including profiling); - Direct marketing (including profiling); and - Processing for purposes of scientific/historical research and statistics.

- Rights in relation to automated decision-making and profiling. ## Donation Refund Policy We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us.

Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card. ## Automated Recurring Donation Cancellation Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time.

But if you must cancel your recurring donation, please notify us.