Pediatric Heart Network - Resources

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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

For Healthcare 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

Current Studies

Single Ventricle (Medication)

Single Ventricle (Surgical)

Single Ventricle Extension

Future and Completed Studies

Mitral Regurgitation (Observational)

FONTAN (Observational)

Kawasaki Disease

Cardiomyopathy (Observational)

Participating Hospitals Publications Helpful Resources

	For more information on congenital heart disease
	Helpful Resources

	MedlinePlus and Congenital Heart Disease
	March of Dimes and Congenital Heart Defects
	American Heart Association and Congenital Heart Defects
	Heart Center Encyclopedia from Cincinnati Children’s Hospital

	Quality of Life Issues
	Feeding Your Infant with Congenital Heart Disease
	Children with Chronic Conditions
	Pain and Your Baby
	Pain and Your Child or Teen

	Agencies and support groups for families with pediatric heart disease
	The Congenital Heart Information Network
	PediHeart
	Mended Little Hearts
	Kids With Heart National Association for Children’s Heart Disorders, Inc.
	Cardiac Arrhythmias Research and Education Foundation
	Children’s Cardiomyopathy Foundation
	Kawasaki Disease Foundation
	Little Hearts

	For information on enhancing children's activity and nutrition
	We Can Program
	Get a Healthy Weight for Your Child: A Parent's Guide to Better Eating and Exercise by Dr. Brian W. McCrindle and James G Wengle. Published by Robert Rose, Inc. (Read an excerpt here from About.com)

	For kids, teachers, parents and doctors to learn how important proper sleep is for kids
	Star Sleeper Program

	For clinical trial information
	ClinicalTrials.gov
	Parent’s Guide to Medical Research from Boston Children’s Hospital
	Pamphlet: Becoming a Research Volunteer: It's Your Decision. (Click here for Spanish version)


	For information on growth and development
	Healthy Start, Grow Smart on best practices in early childhood 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

	Understanding Genetic Conditions
	Genetics Home Reference

	Marfan Syndrome
	National 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

	Other Clinical Study Opportunities
	ClinicalTrials.gov
	The Inventory and Evaluation of Clinical Research Networks

background

Department of Health and Human Services

National Institutes of Health

National Heart, Lung, and Blood Institute