Connecting Translational Research with Parents: There Is Magnificent Value in Parents Sharing Their Personal Journeys and Involvement with Translational Research Efforts. There Is a Critical Role for Parents in Providing Current Information on Developmental Concerns to Health Care Practitioners, as Well as Serving as Content Developers for Materials Conveying How to Address These Concerns

Article excerpt

Translational research is a way of thinking about and conducting scientific research to make the results of research applicable to the population under study and yield practical resources. The Association of University Centers on Disabilities (AUCD) collaborates with the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) on two types of translational research. The first type is the Collaborative Research Awards (CRA), which assist young investigators at AUCD member programs in conducting public health and disability research and to help NCBDDD accomplish the research objectives they identify for their different programs. Ultimately, this proposed effort will help to build the capacity of public health and disability research.

A second type of translational research in which AUCD collaborates is the Research Topic of Interest (RTOI), which is a specific research topic that is of interest to the CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD). Since 2002, the Research Topics of Interest (RTOI) program at AUCD has yielded 43 sub-awards on various topics from autism spectrum disorder (ASD), fragile X syndrome, hearing impairment and hearing loss, to intellectual disabilities.

Act Early Collaboration

AUCD partners with NCBDDD/CDC and the Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA) to implement various projects supported by the "Learn the Signs. Act Early." campaign, which aims to educate parents about childhood development, including early warning signs of autism and other developmental disorders, and encourages developmental screening and intervention. Several collaborative projects connect the Act Early campaign with translational research efforts around increasing awareness and early identification of developmental delays.

Milestone Moments: Research with Parents

A recent Collaborative Research Award study that was conduct-ed with parents contributed to the development of the Milestone Moments brochure, an Act Early resource produced by CDC. Jennifer Burt, PhD, University of Nebraska, served as the CRA Investigator on this effort which examined the role of parent engagement as a critical element to a positive developmental trajectory for children. Parents played a key role in reviewing and creating content for developmental milestones and positive parenting fact sheets. This has subsequently assisted parents in having the knowledge and resources to engage in behaviors that support their child's learning and development or to identify early warning signs of developmental delay. The researcher worked with parents to develop brief summaries for other parents that included journals and resources on key child development topics.

This study also linked service providers to parents. Service providers can offer resources that help parents to understand their child's development and to engage in positive parenting practices. In addition, service providers within pediatric practices and local agencies (e.g., daycares, preschools, early childhood special education, and Head Start) are in a position to provide parents with the necessary information and tools to support their children's development, learning, and health and to enhance these assets within the context of a healthy parent-child relationship.

This project has helped families have more awareness of these resources and be able to access them easily. Thus, this project served to make Act Early resources more user-friendly in order to increase ease of use for families and professionals. The Milestone Moments book-let, as well as other free materials, are available at: http://www. …