Background Information and Research

*This information is optional reading for any participant or community member interested in learning more about the topics covered at the Community Engagement Event.

Check out the research that supports this event

Required reading for Participants

Topics

Public Opinion and Deliberative Community Engagement

Personal Resources

Newborn Screening

Video: (2 minutes) What to expect from your baby’s first test (español)
Video: (3 minutes) What is Newborn Screening? (español)
Video: (less than 2 minutes) A Simple Test can Change your Baby’s Life *Note: This video is from Arizona Department of Public Health- but the process is very similar to Iowa, and includes real footage of the test)
Baby’s First Test Website (español)
See the form that is used for Newborn Screening Samples
Hear stories about Newborn Screening
Newborn Screening Story: How one simple test changed...America (ebook)
Other websites

Public Health

Iowa Department of Public Health
American Public Health Association
Video: (2 minutes) What in the Health is Public Health? Treatment vs. Prevention (español)
Video: (about 3 ½ minutes) Health Economics (what is it?) (español)

Genetics

Video: (5 minutes) What is DNA and how does it work (español)
Video: (2 minutes) Heredity- Why you look the way you do (español)
Understanding Genetics (español)
Genetic and Rare Diseases Information Center (español)
Genetics Home Reference: Understanding Terms and Definitions in Genetics

New Conditions

Pompe Disease

Pompe community website: about the disease, resources and living with pompe disease
Baby’s First Test information about Pompe Disease (español)

MPS-I

National MPS society website: about the disease, resources and living with MPS (español)
Baby’s First Test information about MPS-I (español)

X-ALD

United Leukodystrophy Foundation: about the disease, resources and living with ALD (español)
Baby’s First Test information about X-ALD (español)

Public Opinion and Deliberative Community Engagement

Video about a similar Community Engagement Event
What is Deliberative Public Engagement? (español)

Personal Resources

Guidelines for finding other information: Understanding Health Information and Web Searching (español información de salud y diferenciar la buena información)
Talking to your family about Genetic Conditions: Booklet 1 Booklet 2 Libro 1 Libro 2
Coping with worry and stress (click to zoom in)
How to manage worry and thoughts (self-help strategies) (español)