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For Parents
What is the Pediatric Heart Network?
Why Include Children in Research?
Should My Child Join a Study?
Rights and Responsibilities in a Study
Ensuring Safety in PHN Studies
My Child’s Nutrition and Activity
Coping With a Chronic Illness
The Loss of a Child
Bereavement - Families
Communicating with your Child’s School and Teacher
For Teens
Growing Up with CHD
Healthy Lifestyle & Healthy Heart
Lifestyle Choices & Risky Behavior
Transition to Adult Care
Bereavement - Teens
For Providers
What is the Pediatric Heart Network?
How Studies are Created and Monitored
Is a Clinical Study Right for Your Patient?
How to Refer a Patient for a Study
Echo Z-Scores
For Researchers
Developing a Research Career
PHN Public Use Datasets
Relevant NHLBI Resources
Joining the PHN
PHN Policy Manual
PHN New Study Proposal Form
Echo Z-Scores
Studies
Current Studies
Coming Soon
Completed Studies
Study Map
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About the PHN
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About the PHN
Publications
PHN Scholar Award Recipients
Helpful Resources
Echo Z-Scores
Helpful Resources
For more information on congenital heart disease
MedlinePlus and Congenital Heart Disease
American Heart Association and Congenital Heart Defects
Heart Center Encyclopedia from Cincinnati Children’s Hospital
NHLBI and Congenital Heart Disease
Quality of Life Issues
Your Child’s Special Needs and Nutrition
Children with Chronic Conditions
Pain and Your Baby
Pain and Your Child or Teen
QuitDay
Agencies and support groups for families with pediatric heart disease
The Congenital Heart Information Network
PediHeart
Mended Hearts & Mended Little Hearts
Kids With Heart National Association for Children’s Heart Disorders, Inc.
Children’s Cardiomyopathy Foundation
Kawasaki Disease Foundation
The Children’s Heart Foundation
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“It’s My Heart” Handbook for Parents
Little Hearts, Inc.
SADS (Sudden Arrhythmia Death Syndromes) Foundation
For information on enhancing children's activity and nutrition
We Can Program
Free videos for children and teens with serious illnesses
Starbright Foundation Games and Videos
For clinical trial information
Children and Clinical Studies
ClinicalTrials.gov
A Parent’s Guide to Clinical Trials - Boston Children's Hospital
For information on growth and development
Center for Disease Control on Child Development
Infant (0-1 year) Development
Toddler (1-2 years) Development
Toddler (2-3 years) Development
Preschooler (3-5 years) Development
Childhood (6-8 years) Development
University of Michigan Developmental Milestones
Adults with Congenital Heart Disease
Adult Congenital Heart Association
American Heart Association
Marfan Syndrome
NIH on Marfan Syndrome
The Marfan Foundation
Down Syndrome
National Down Syndrome Society
Bereavement
Alliance of Grandparents, a Support in Tragedy (AGAST)
Bereaved Parents of the USA
The Compassionate Friends
Healing Hearts of Bereaved Parents
About the PHN
Publications
PHN Scholar Award Recipients
Helpful Resources
Echo Z-Scores
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