Community Autism Research Ambassador Program

Resources

About Patient-centered Outcomes Research

Three people sit smiling at a table, looking at a document together.

The PCORI Approach to Patient-Centered Outcomes Research

This interactive PDF introduces you to patient-centered outcomes research and how it is different from traditional healthcare research. (10 minutes)

A group sits working together at a conference table with laptops and documents in front of them.

Engaging in Stakeholder Driven Research

In this video-based module, patients, clinicians, and members of the PCORI healthcare community describe engagement in stakeholder-driven research. (20 minutes)
A diverse group of people sitting together showing hand gestures that suggest conversation and collaboration.

Developing Research Questions

This module explains how studies are created through research questions, and the kinds of questions that patient-centered outcomes research tries to answer. (30 minutes)

Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program

Screenshot of the learn the signs act early website showing a banner reading ''help your child grow and thrive' with a mother holding a young child.

Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program

Self-care for self-advocates and caregivers (downloads)

What is self-care?

  • Self-care is the act of caring for yourself.
  • It is different for everyone.
  • Self-care needs to be practiced every day.
  • It is about doing less and moving away from your to-do list.
  • To give more to your loved ones, you must first give to yourself.

Free Downloads

Self-care resources document with a colorful patterned heading of blues, red, and orange, and a woman sitting peacefully outdoors.

Self-care Tips to Get You Started

Family Voices

Fact Sheet
Self-care affirmations document with a colorful patterned heading of blues, red, and orange.

Self-care Affirmations

Care mapping activity worksheet with a colorful patterned heading of blues, red, and orange.

Care Mapping Activity

Reader's guide document broken into sections with bullets and labeled 1, 2, 3

Reader’s Guide: We Dare Be Brave: African American moms and the emotional journey of raising children with disabilities

Autism Resources

Autism acronyms and abbreviations document listed alphabetically, with a colorful patterned heading of blues, red, and orange.

Autism Acronyms and Abbreviations You Should Know

Adapted from “Common Acronyms Used in Autism” by The Autism Community in Action (TACA)

Fact Sheet
Where to go for help document with a colorful patterned heading of blues, red, and orange.

Where to Go for Help

Family Voices

Fact Sheet
Care mapping activity worksheet with a colorful patterned heading of blues, red, and orange.

Videos about Autism for African American Families

Philadelphia Autism Project

Video

This program was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC-IDD-00251)

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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