Autism Research and Engagement Core News
Several MCDD Autism and Research Engagement team members are consultants to Simons Powering Autism Research (SPARK), a long-term study of autism spectrum disorder. Those members include Marina Sarris, MA, web content administrator; Cheryl Cohen, MS, director of online community programs; Alison R. Marvin, PhD, research manager; Jaimie Toroney, MHS, research manager; and J. Kiely Law, MD, MPH, research director.
SPARK is now considered the largest long-term autism research study, with over 310,000 people fully enrolled in the program. SPARK Research Match, which matches researchers with people who want to participate in their autism studies, has launched more than 180 studies. New studies are being launched at the rate of one per week. The ability to recruit research participants from SPARK’s members has enabled many research studies throughout the country to meet their recruitment goals and successfully complete their studies. The most recent application deadline on June 30th yielded several new applicants and a few renewals for projects that have been recruiting for one year and are choosing to continue recruitment.
More than 50,000 families have participated in at least one Research Match study, and many have participated in more than one study. Researchers using SPARK Research Match have published 39 peer-reviewed articles. SPARK data, which is a resource available to qualified researchers, has yielded 52 peer-reviewed publications and many more preprints, research papers shared before peer-review. For a list of those articles, visit the SPARK Research Publications section on the SPARK website.
There are over 30,000 women and girls with autism in SPARK! This statistic makes SPARK the largest research study of autistic women and girls in the country. On May 31, Sarris wrote an article, “Is Autism Different in Girls?” which includes statements from Dr. Ericka Anderson Wodka, PhD, ABPP-CN, clinical director of Kennedy Krieger’s Center for Autism and Related Disorders (CARD). SPARK recently released a video on the topic of women and autism, “Autistic Women and Girls Need Your SPARK.”
SPARK published an article, written by Sarris, about a Kennedy Krieger family who serves on the African American and Black Family Advisory Board to the SPARK study at Kennedy Krieger’s CARD. The article, “Parenting in a Pandemic: A Journey to Autism Diagnosis and Advocacy,” was published on May 24.
The principal investigator of SPARK, Dr. Wendy Chung, MD, PhD, started her new position at Boston Children’s Hospital (BCH) on July 1. She brought the SPARK registry with her to BCH, and there has been a lot of ongoing administrative work to support the transition. The full transition of the registry is expected to take place at the end of 2023. As the transition of the SPARK registry from Simons Foundation to BCH unfolds, there will be fewer SPARK staff members dedicated to SPARK Research Match. As such, plans are being implemented to determine the best approach to transitioning the large volume of applications received each quarter.