We are gearing up for our Fall 2024 FON & NPC-QIC Learning in St. Louis, Missouri, from Friday, October 25 to Saturday, October 26. This year, we are excited to offer a Pre-Session, Five Methods of Learning from Data, on Thursday, October 24!

Session Description: Melanie Miner and Drew Warmin (Learning Network Data and Quality Leads) will delve into five methods of learning from network data in the context of a productive learning health system network. These methods have been adapted from The Healthcare Data Guide and have proven effective in driving system-wide improvements across multiple networks. During the session, you will consider how these methods could be utilized in FON and NPC.  After the session, participants will receive references to other network studies that utilize these methods, which include using Shewart charts, observational studies, and planned experimentation.

Fall 2024 Learning Session Objectives:

• Build community with patients, parents, and healthcare professionals on NPC-QIC and FON teams

• Identify recent work and accomplishments within NPC-QIC and FON

• Apply registry/survey data results to network activities, including improvement and research

• Describe the Model for Improvement/Data Analytics in current NPC-QIC and FON improvement projects

• Develop a team 90-day action plan for building or strengthening community with patients and parents

• Discuss topics across lifespan that impact single ventricle care and outcomes

There is so much that is still unknown concerning how best to manage individuals with single ventricle and a Fontan circulation. While we await development of the Fontan Outcomes Network (FON) registry and data collection, one way for us to make an important difference now is to share experiences and knowledge with each other.

Our network is therefore conducting "FON Case Review Conferences” throughout the year. The purpose is to promote exchange and engagement between FON care centers through patient-based case presentations and discussion, to share knowledge, improve clinical care and promote thoughtful, evidence-based best practices.

Visit fontanoutcomesnetwork.org for additional details.

There is so much that is still unknown concerning how best to manage individuals with single ventricle and a Fontan circulation. While we await development of the Fontan Outcomes Network (FON) registry and data collection, one way for us to make an important difference now is to share experiences and knowledge with each other.

Our network is therefore conducting "FON Case Review Conferences” throughout the year. The purpose is to promote exchange and engagement between FON care centers through patient-based case presentations and discussion, to share knowledge, improve clinical care and promote thoughtful, evidence-based best practices.

Visit fontanoutcomesnetwork.org for additional details.

There is so much that is still unknown concerning how best to manage individuals with single ventricle and a Fontan circulation. While we await development of the Fontan Outcomes Network (FON) registry and data collection, one way for us to make an important difference now is to share experiences and knowledge with each other.

Our network is therefore conducting "FON Case Review Conferences” throughout the year. The purpose is to promote exchange and engagement between FON care centers through patient-based case presentations and discussion, to share knowledge, improve clinical care and promote thoughtful, evidence-based best practices.

Visit fontanoutcomesnetwork.org for additional details.

NPC-QIC Members: Register & join us on Thursday, January 18, 2024 at 3 p.m. ET for our NPC-QIC Action Period Webinar!

Register in advance for this meeting: https://npcqic.zoom.us/j/84933115206?pwd=SzJjWFZ0ZnJON3d2T0RrNVlvK21YUT09

The next Health Equity Project webinar is scheduled for Wednesday, January 17, 2024, from 5 to 6 p.m. EST. Centers will learn how to use a new Health Equity Data Redcap Query Tool for the NPC-QIC database.

Register in advance for the webinar:

https://npcqic.zoom.us/meeting/register/tZcsf-CrrT0jHtNWQZ2RzOvg6qrH5nVaNwOD

After registering, you will receive a confirmation email containing information about joining the meeting.

Questions? Contact info@npcqic.org.

• Host: Rady Children's Hospital-San Diego, UC San Diego School of Medicine

• Presenter: Dr. Howaida El-Said, director of the cardiac catheterization laboratory at Rady Children's Hospital-San Diego and professor of clinical pediatrics at UCSD

• Topic: Creating a connection of the azygous vein and the Fontan conduit in the catherization lab for a patient with left pulmonary AVMs

There is so much that is still unknown concerning how best to manage individuals with single ventricle and a Fontan circulation. While we await development of the Fontan Outcomes Network (FON) registry and data collection, one way for us to make an important difference now is to share experiences and knowledge with each other.

Our network is therefore conducting "FON Case Review Conferences” throughout the year. The purpose is to promote exchange and engagement between FON care centers through patient-based case presentations and discussion, to share knowledge, improve clinical care and promote thoughtful, evidence-based best practices.

Visit fontanoutcomesnetwork.org for additional details.

RESCHEDULED to November 16: NPC-QIC Members: Register & join us at 3 p.m. ET for our NPC-QIC Action Period Webinar!

Register in advance for this meeting: https://npcqic.zoom.us/meeting/register/tZAqc-mqpj0sGNVpIlK40jLDDGVG4EKC4HBJ

Join the Gross Motor Project co-leads in discussing their recent toolkit and how centers have used it throughout the year.

This webinar features a presentation from Karen Uzark, author of Evaluation of a "tummy time" intervention to improve motor skills in infants after cardiac surgery.

Sarah Mabe Barr from Dell Children’s Medical Center will also be a featured guest to discuss the process of rolling out new sternal precautions at their center.

View the toolkit

Register in advance for this meeting here.

https://npcqic.zoom.us/meeting/register/tZcldeirqDoiGdVcW323y0AnmxHp65BPwg6N

Questions? Please email info@npcqic.org.

NPC-QIC Members: Register & join us on Thursday, August 17 at 3 p.m. ET for our NPC-QIC Action Period Webinar!

Register in advance for this meeting: https://npcqic.zoom.us/meeting/register/tZcpc-6ppjMqHNCKdWqK1HWIE3W-6rcF7agd

All NPC-QIC members are invited to join us on July 27 from 3:00-4:30 p.m. ET for a Health Equity Project Webinar: “Community Engagement to Address Maternal Disparities.”

This webinar will feature keynote speaker, Rolanda Lister, MD, Associate Professor, Division of Maternal Fetal Medicine, Department of Obstetrics & Gynecology, Vanderbilt University Medical Center presenting on Community Engagement to Address Maternal Disparities.

Register in advance for this meeting: https://npcqic.zoom.us/meeting/register/tZIsc-yurD4qE92xjDkcEsGqPbDNhDA_Oy49.

After registering, you will receive a confirmation email containing information about joining the meeting.

Questions? Please contact info@npcqic.org.

All NPC-QIC centers are invited to join us on July 11 from 5:00-6:00 p.m. ET for an Unplanned Reinterventions Project Webinar: "A Comprehensive Approach to the Management of Patients With HLHS"

Presenters: Jennifer Co-Vu and Mark S Bleiweis, University of Florida Health

The talk will provide valuable insights into our institution’s approach to managing patients with single ventricle heart disease, particularly Hypoplastic Left Heart Syndrome (HLHS). The talk will highlight the use of Ventricular Assist Devices (VADs) and hybrid techniques for specific cases, and also UFCHC’s low unplanned reintervention rates, which have significantly improved patient outcomes.

Speakers will also discuss the challenges associated with managing patients with HLHS and the limitations of conventional treatments. They will explain how the comprehensive approach involves combining medical therapy, surgical intervention, and innovative techniques to maximize patient outcomes.

Please register in advance for this webinar: https://npcqic.zoom.us/meeting/register/tZIucu2upzkqEtCEqrVL6_1L1W5Tiz_MKryb

After registering, you will receive a confirmation email containing information about joining the meeting.

Questions? Please contact info@npcqic.org.

Join us for an Interstage Change Package Webinar on June 27 at 4 p.m. ET.

Please register for this event here: https://npcqic.zoom.us/meeting/register/tZMlcOuhpz8iHd240K2WAto6-hbc1SMFpiSU. After registering, you will receive a confirmation email about joining the meeting.

The “Interstage” is the time period, typically 4-6 months, between the first surgical palliation (S1P – typically a Norwood procedure) and the second (Glenn) operation. It is historically a time of risk for HLHS infants.

Since the Collaborative’s inception, NPC-QIC centers and parent partners have worked together to improve care and outcomes during the Interstage period.

Learn more about the strategies for NPC-QIC clinicians, parents, and researchers to use as they begin or advance Interstage quality improvement (QI) efforts.

Join us for a Gross Motor Toolkit Webinar on May 17 at 4 p.m. ET.

Please register for this event here: https://npcqic.zoom.us/meeting/register/tZcodumrqz0qGtEq1a1sknnhjyc3wuEyUBeQ. After registering, you will receive a confirmation email about joining the meeting.

Neurodevelopmental disability is a significant concern for individuals with complex congenital heart disease (CHD) across the lifespan. Gross motor delays are common in infants with single ventricle CHD, with greater than 60 percent of NPC QIC-enrolled infants not scoring “on target” at 12 months on the Ages & Stages Questionnaire (ASQ) developmental screener. The early identification and treatment of developmental concerns, starting in infancy, can positively impact the developmental trajectory of these infants. 

Join the team to learn more about the toolkit and practices in this area. 

Register today and join us on Friday, May 5 for this valuable opportunity for our learning health network to build a stronger sense of community, learn about the network's latest work, and share learnings.

Click here to view our high-level agenda! Session objectives include:

• Build community, with patients/parents, with clinicians, and across FON and NPC-QIC 

• Identify opportunities to engage in network activities 

• Describe current and in-design quality improvement projects

• Apply registry learnings to network activities, including improvement & research

Click here to learn more and register for the learning session.

Email info@npcqic.org with any questions or concerns. We look forward to connecting with you soon in the virtual world!

Please join us on Thursday, April 6 at 5 p.m. ET for a Health Equity Project webinar featuring a keynote presentation on the Social Determinants of Health, along with Breakout Group discussion.

Registration is required, so please make sure to register in advance for this meeting: https://npcqic.zoom.us/meeting/register/tZIpdOiqrz8rGtX3lK_EQ8zA6W5MMWLONV8a

After registering, you will receive a confirmation email containing information about joining the meeting.

Please note: this webinar is open to all NPC-QIC members. Contact info@npcqic.org with any questions.

NPC-QIC Members: Register & join us on Thursday, April 6 at 3 p.m. ET for our NPC-QIC Action Period Webinar!

Register in advance for this meeting: https://npcqic.zoom.us/meeting/register/tZcpfuyqqTkvH9yJFs0Nq6LcdwO_pf4aCrMa