Wednesday, May 18, 2022
In 2016 the Simons Foundation launched a nationwide genetic longitudinal autism study with the goal of recruiting 250,000 persons with autism to better understand its causes and how the diagnosis impacts families and individuals. The Center for Autism (CARD) at Kennedy Krieger Institute is one of thirty-one clinical sites across the nation participating in this unprecedented research opportunity. While the ease of enrollment was at the forefront of this endeavor with the enrollment completely virtual (online), time and data soon revealed that there were segments of the ASD community who were not as engaged as others. Particularly, Black or African Americans.
As of November 2021, the participation rate for the B/AA community in SPARK was just under eight percent. In response to these findings, Simons released a request for proposals to address this disparity through a DEI Grant. CARD applied for and was awarded this grant to raise awareness and increase participation of Black or African American communities in SPARK.
Eva Queen, CARD's newly hired Diversity, Equity and Inclusion Outreach Coordinator and the SPARK research team launched the Institute's first African American Family Advisory Board (AAFAB). The AAFAB includes parent advisors, community leaders and medical professionals. The mission of the AAFAB is to assist the SPARK for Autism team at Kennedy Krieger Institute with its efforts to better reach communities of color, who are typically underrepresented in autism spectrum disorder (ASD) research.
For more information, contact:
Email: [email protected]
Phone: 443-923-7717