Special Interest Groups (SIG)
Special Interest Groups (SIG) are designed to facilitate multicenter, multinational, and multidisciplinary (including patients and caregivers) collaboration to further the vision and mission of CNOC. SIG are formed by CNOC members and are focused on a specific topic or interest area related to cardiac neurodevelopment. Any CNOC member affiliated with a CNOC member site may apply to form and chair a SIG.
CNOC is pleased to accept applications for the formation of Special Interest Groups. Applications and inquiries can be sent to CNOC’s Member at Large for SIGs listed on the Steering Committee page.
SIG: Cardiac Neurodevelopment Program Coordinators (CNPC)
About the Cardiac Neurodevelopment Program Coordinators (CNPC) SIG:
Welcome to the CNPC SIG! The CNPC SIG is a multidisciplinary group of providers who operate as program coordinators for their institution’s Cardiac Neurodevelopment Program. The purpose of this SIG is to create a network to connect Cardiac Neurodevelopment Program Coordinators across North America to share information and insights to support one another and our programs.
Short-Term Goals (years 1-2):
- To develop a network of cardiac neurodevelopment program coordinators to connect and share information and experiences to strengthen individual programs and the CNOC community
- To improve quality of care in the clinical setting and enhance clinic operations for patients and faculty across CNOC sites
Long-Term Goals (years 3-5):
- Provide a modality for nurses and interprofessional providers to become more engaged in CNOC
- To develop evidence-based cardiac neurodevelopment patient and family educational materials that are consistent across CNOC sites
- To develop a CNOC clinical site visit program to allow healthcare providers and program coordinators across North America to learn from one another and build relationships
Vanna Kazazian MN NP
Rebecca Chen BSN
SIG: Cardiac Newborn Neuroprotective Network (CNNN)
Welcome to the Cardiac Newborn Neuroprotective Network (CNNN), a multidisciplinary professional group collaborating to improve the care of infants with complex congenital heart defects (cCHD).
- Promote individualized developmental care for infants with cCHD
- Delineate standard care practices for infants with cCHD
- Disseminate information, materials, and education
- Collaborate on manuscripts and quality improvement projects
- Share evidenced based ideas
- Align with families of infants with cCHD
CNNN on Social Media
Lisanti AJ, Vittner D, Medoff-Cooper B, Fogel J, Wernovsky G, Butler S. Individualized Family-Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease. J Cardiovasc Nurs. 2019 Jan/Feb;34(1):85-93.
Jones CE, Desai H, Fogel JL, Negrin KA, Torzone A, Willette S, Fridgen JL, Doody LR, Morris K, Engstler K, Slater NL, Medoff-Cooper B, Smith J, Harris BD, Butler SC. Disruptions in the development of feeding for infants with congenital heart disease. Cardiol Young. 2021 Apr;31(4):589-596.
Desai H, Jones CE, Fogel JL, Negrin KA, Slater NL, Morris K, Doody LR, Engstler K, Torzone A, Smith J, Butler SC. Assessment and management of feeding difficulties for infants with complex CHD. Cardiol Young. 2022 Dec 23:1-10.
Lisanti AJ, Vittner DJ, Peterson J, Van Bergen AH, Miller TA, Gordon EE, Negrin KA, Desai H, Willette S, Jones MB, Caprarola SD, Jones AJ, Helman SM, Smith J, Anton CM, Bear LM, Malik L, Russell SK, Mieczkowski DJ, Hamilton BO, McCoy M, Feldman Y, Steltzer M, Savoca ML, Spatz DL, Butler SC. Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young. 2023 Mar 30:1-18.
Frequently Asked Questions
Q: Does my institution have to be a member of CNOC to maintain membership with the CNNN?
A: If your institution is not a CNOC Institutional Member, you can still be part of our SIG by filling out the Nonmembers SIG/Committee Only application and paying a nominal fee. Additionally, please reach out to Donna and Lauren (emails above) to notify them of your request for SIG membership.
Q: What are the benefits of being a member?
A: As a benefit, you will have access to our listserv. It is a judgement-free zone for collaboration and has stayed true to its grassroots philosophy that we can learn and grow together. We also collaborate on Quality Improvement projects, manuscripts, and educational initiatives, which you are welcome to join.
Q: What disciplines does CNNN represent?
A: CNNN members represent many disciplines (physicians, advance practice practitioners, nurses, speech/language pathologists, physical therapists, occupational therapists, psychologists, dietitians and family members of individuals with CHD).
SIG: CHD and the Developing Fetal Brain
Over the last decade, we have learned that the developing fetal brain is vulnerable in the setting of congenital heart disease. Disturbances to brain maturation begin in utero for fetuses with complex CHD and may increase the risk of acquired brain injury and future neurodevelopmental impairment. Novel magnetic resonance imaging techniques have enabled quantification of brain maturity and early assessments of the intersection between cardiovascular physiology and brain maturity. In recent years, we have learned that other factors may play an important role in brain development, including genetic and environmental (i.e. socioeconomic status, maternal stress) factors.
In order to fully understand the relative contribution of each of these factors (physiology, environment, genetic), large studies that can analyze different cardiac sub-groups separately are needed. Most single center studies do not have the sample size to effectively study sub-groups of CHD. Thus, a collaborative effort is required to combine imaging studies across institutions along with granular genetic and environmental data to provide the foundation for urgently needed fetal neuroprotective clinical trials. Our collaborative efforts will not only advance knowledge and create innovation but may provide data to influence policies around the care of the pregnant women whose fetuses are affected by CHD (i.e. routine psychological and stress support for mothers and fathers, advocacy for vulnerable underserved populations).
The short-term goals of this SIG are to:
- Bring together a multi-disciplinary group of individuals with an interest in understanding the developing fetal brain in congenital heart disease (physicians, researchers, radiologists, physicists, nurses, psychologists);
- Begin to develop a mechanism to enable data sharing of fetal imaging studies across institutions and platforms (i.e. different imaging vendors);
- Focus on the intersection of fetal cardiovascular physiology, environmental, and genetic factors with brain development utilizing novel imaging modalities that can be shared across institutions.
Over the long-term, we aim to combine pooled fetal neuroimaging data with neurodevelopmental outcome data collected through CNOC to understand fetal markers of neurodevelopmental outcome and utilize this SIG as a resource to investigators embarking on fetal neuroprotective trials to provide a platform for mentorship, collaboration, and data sharing.
Please contact SIG Co-Chairs Shabnam Peyvandi and Caitlin Rollins if you are interested in joining this SIG or with questions.
SIG: Diversity and Inclusion
The goals of the Diversity and Inclusion SIG are to: 1) Promote diversity through the development of best-practice standards for clinical care and research to enhance health equity, and 2) Promote diversity among providers within CNOC and support clinical and research activities of the group.
The initial focus of this SIG will be on relevant deliverables that will support the ongoing mission of CNOC to improve health equity among diverse individuals. Short-term goals may include, but are not limited to, the following:
- Develop and maintain a repository of evidence-based, best-practice resources for investigators and clinicians to inform health equity research and intervention for children with CHD. To meet this goal, we may survey CNOC member institutions on current cross-cultural neuropsychological assessment practices. From these data, identify strengths and opportunities for growth in cross cultural/bilingual assessment practices and make formal practice recommendations including:
- Recommendations for Spanish/Bilingual Evaluation
- Recommendations for working with interpreters and appropriate tests to use
- Guidelines for standardized approaches to analysis and interpretation of cross cultural neuropsychological/neurodevelopmental data
- Support the clinical data registry and research aims by identifying gaps in diversity demographic data, and methods of collecting targeted information that will better inform how health inequity may intersect with neurodevelopmental outcomes. Examples may include:
- A detailed geographical distribution of patients
- Methods of measuring school and early intervention “quality” which may have a significant impact on long-term outcome
- Offer incentives to faculty and student researchers to focus on topics of diversity and health equity in children with CHD through outreach, support, and recognition. Examples may include:
- Special award at symposium for best poster addressing specific diversity issue
- Identify diverse faculty willing to serve as CNOC diversity mentors to younger colleagues and students engaging in clinical research at their institutions
SIG: Innovative Approaches to Outpatient Neurodevelopmental Care
The Innovative Approaches to Outpatient Neurodevelopmental Care SIG was formed by several of the original members of CNOC’s Telehealth Task Force (TTF). The TTF was formed in the Summer of 2020 in response to the COVID-19 pandemic to provide rapid guidance on best practices for remote neurodevelopmental screening, evaluation, and care of individuals with pediatric and congenital heart disease. This task force was highly productive, generating guidelines for CNOC clinicians and peer-reviewed publications.
As in-person clinical care largely resumed in 2022, our group shifted focus to explore how we might harness lessons learned during the pandemic to improve and innovate cardiac outpatient neurodevelopmental (ND) care. We soon realized the benefits of expanding the group to include input from a wider range of specialties and felt this would be best accomplished through a SIG.
- Expand our SIG to have representation across disciplines, including patients and family members.
- Facilitate discussions of current practices and approaches to cardiac ND care across our represented CNOC centers. This will include, but is not limited to:
- How to manage increasing demand and patient volumes. Specifically, how we prioritize and triage patients and how we can support families while they wait for a more comprehensive evaluation or visit.
- Models for providing care, including incorporation of telehealth, as well as discussions of how outcomes and other key metrics are tracked across centers.
- How to harness innovative care models to address health disparities and improve access to outpatient cardiac ND care across diverse populations.
- Discussions about best practices and strategies to optimize cardiac ND care may be informed by reviewing challenges and approaches that have been successful in promoting ND care in other at-risk pediatric populations and sharing our experiences beyond the cardiac population.
- Identify basic principles, processes, and guidance for how to establish and maintain a cardiac neurodevelopmental program, whether this be starting a new program or expanding an existing program.
- Create shared resources and tools for programs and their teams, which we envision will be especially useful for new CNOC members. We also aim to provide resources for families on the purpose and processes of a cardiac neurodevelopmental clinic and the role of these programs in supporting optimal neurodevelopmental care.
- Over time, our goal is to establish best practices for supporting outpatient cardiac neurodevelopment program growth, including triage, screening, care, and funding approaches. We will also identify recommended metrics or other methods of tracking patient follow-up, outcomes, and overall clinical care.
Please contact Co-Chairs Stephany Cox or Renee Sananes if you are interested in joining this SIG or have questions.
Internal CNOC Resources from the TTF: https://www2.cardiacneuro.org/members/telehealth/
Cox, S., Butcher, J., Sadhwani, A., Sananes, R., Sanz, J.., Blumenfeld, E., Cassidy, A., Cowin, J., Ilardi, D., Kasparian, N., Kenowitz, J., Kroll, K., Miller, T., & Wolfe, K. Integrating Telehealth Into Neurodevelopmental Assessment: A Model From the Cardiac Neurodevelopmental Outcome Collaborative (2022). Journal of pediatric psychology, 47(6), 707-713.
Kasparian, N., Sadhwani, A., Sananes, R., Blumenfeld, E., Butcher, J., Cassidy, A., Cox, S., Kenowitz, J., Miller, T., Sanz, J., Wolfe, K., & Ilardi, D. (2022). Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: a site survey from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiology in the young, 1-8.