CCF Releases New Pediatric Heart Failure Guidebook

The most common forms of heart disease causing heart failure in children are cardiomyopathies and congenital heart defects. Pediatric heart failure specialists from 13 medical centers across the U.S. and Australia collaborated with CCF to develop Pediatric Heart Failure: A Guide for Patients and Families. The 41-page guidebook covers topics specific to children experiencing heart failure, including types of heart dysfunction, signs and symptoms, diagnostic testing, medications, exercise and nutrition, and advanced heart failure therapies.

The comprehensive guidebook was produced by CCF and funded in part by Novartis as a companion piece to CCF's Pediatric Heart Transplants: A Guide for Patients and Families. Ryan Butts, M.D. of Children's Medical Center of Dallas served as editor of the writing committee. Co-editors were Steve Kindel, M.D. of Children's Hospital of Wisconsin; Jonathan Johnson, M.D. of Mayo Clinic Children's Center; and Heather Henderson, M.D. of the Medical University of South Carolina.
View guidebook

New COVID-19 Information for Cardiomyopathy Patients

CCF continues to provide information and updates on the impact of COVID-19 on pediatric cardiomyopathy patients. 

On June 4, CCF hosted a second webinar on COVID-19, Updates for Cardiomyopathy Families, with Dr. Daphne Hsu, Chief of Pediatric Cardiology, and Dr. Neha Bansal, attending physician, both affiliated with the Children’s Hospital at Montefiore. The webinar reviewed updates on COVID-19 and presented preliminary findings from CCF's COVID-19 survey.

CCF's COVID-19 patient survey has been completed by 65 parents. Current findings show that over 43% of parents felt that their child experienced COVID-19 symptoms in the last 3 months. From the 55% who sought medical attention, only 11% were tested. Fortunately, all who were tested were found to be negative, which is consistent with the low numbers of pediatric cardiomyopathy cases being reported by major medical centers. Parents of children diagnosed with cardiomyopathy, who have not filled out the survey, are encouraged to participate if their child has experienced COVID-19 symptoms in the last three months.

In April, CCF collaborated with the University of Michigan on an international COVID-19 survey to determine the impact on pediatric and adult congenital heart disease care and related psychological stress. Out of 1,220 participants from 25 countries, responses indicated that 46% of cardiac clinic visits and 38% of invasive procedures were postponed due to COVID-19 concerns. Nearly half of all pediatric patients and parents/caregivers surveyed reported a high level of stress and ongoing concern about illness from COVID-19.

View the webinar

Update on Cardiomyopathy Centers of Care Program

CCF's Centers of Care Program is now inviting new medical centers to apply for recognition as a cardiomyopathy specialty center. This program recognizes medical centers in the U.S. and Canada that provide high-quality cardiac care and specialized disease management for children with cardiomyopathy. The program seeks to elevate treatment standards and assist families in selecting a medical center experienced in treating all forms of pediatric cardiomyopathy. 

To date, 42 centers are recognized as Cardiomyopathy Centers of Care. Medical centers interested in applying or renewing their status should submit CCF's hospital information and collaboration forms by July 10th. The program is open to medical centers treating children who are at risk or diagnosed with cardiomyopathy. Centers must meet specific medical management requirements outlined by CCF. Newly recognized centers will be announced during Children's Cardiomyopathy Awareness Month in September. For more information, visit CCF's Centers of Care Program webpage.

View center criteria
Complete hospital information form
Complete collaboration form

CCF 2019 Annual Report Available Online

The 2019 Annual Report, Making An Impact, is now available for download from CCF's website. The report outlines the Foundation's main achievements in 2019, including highlights from CCF's first family conference in Philadelphia. On the research front, four new research studies were funded on pediatric cardiomyopathy, and findings from previous CCF-funded studies lead to 13 medical presentations and peer-reviewed publications in 2019.

Contributions to CCF's Spring Appeal will go towards supporting new projects in research, education, and family support in 2020 and 2021.

View 2019 Annual Report

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