For over a decade, the Hartwell Foundation has provided millions of dollars to fund biomedical research, all for the benefit of children, with an increasing focus on individuals with autism. Their mission with the new Kids First initiative is to help families and individuals by accelerating the understanding of autism and identifying better treatments and therapies for each child. In line with its
mission, the Hartwell Foundation has partnered with Stanford University, University of California Davis, and Case Western Reserve University to enroll parents into the Kids First Autism Registry. CWRU utilizes its Program for Autism Education and Research (PAER) to partner with surrounding hospitals systems and community partners including University Hospitals and MetroHealth System in order to more seamlessly enroll interested northeast Ohio families into the registry. Interested families can enroll by completing a 10-15 minute introductory survey to better assess past and current behavior, co-occurring medical conditions, and possible needs of the family. All information is held on a confidential web server and only available to the Kids First researchers. Parents are able to see aggregate, deidentified information for the entire database collected from the survey questions including demographics, information on symptoms and intervention, and co-occurring medical conditions. Additionally, participants can see algorithm-identified resources for autism-related care and respite by zipcode to facilitate connection with care providers, schools, and resources within the community. The Kids First autism registry provides an opportunity for researchers to begin the essential first steps of sorting and organizing the characteristics of autism. As categories are identified, requests for information that, combined with other data—such as genomic information—will facilitate a detailed subclassification of ASD. If you are a service provider, professional, or represent an organization that may be interested in helping the KidsFirst team enroll parents into the research registry, there are many ways you can help, including:
Allowing our team to exhibit at school or organization-sponsored events, co-sponsored events with Kids First, KidsFirst speaking engagements at your facility, and flier distribution. We invite you to contact the Cleveland area Principal Investigator for more information:
