Engaging families of children with rare genetic disorders via a novel online platform

Project Type(s):

Principal Investigator(s):
Co-Investigator(s):

The goal of this project is to engage more families of children with CHD8 mutations with a novel online platform (GroopIt) and to empower families to be partners in research. We are utilizing a community-based participatory research (CBPR) approach to enable families to identify research priorities. Through an established Facebook group for CHD8, families will be surveyed to prioritize research topics of interest that were identified in previous focus groups, such as parenting stress or gastrointestinal problems. The use of the updated GroopIt platform as an innovative, online tool will increase both the engagement and accessibility of research to families of children with rare genetic disorders associated with ASD.

Project Period:
May 1, 2020 — May 1, 2021

Funding Type(s):
Internal

Funder(s):
UW Psychiatry & Behavioral Sciences

Geographic Area(s):
National

Practice Type(s):
Online/remote/apps/social media

Patient Population(s):
Caregivers/Providers

Targeted Condition(s):
Autism Spectrum Disorder