Clinical research is critical to advance our understanding of the causes of neurodevelopmental disorders and to develop effective treatments. The Seaver Autism Center for Research and Treatment at Mount Sinai maintains an active clinical research portfolio with a variety of recruiting studies at any given time.
Individuals on the autism spectrum as well as those with certain related genetic syndromes may be eligible to participate. The Seaver Center’s Rare Disease Program studies Phelan-McDermid syndrome, ADNP syndrome, FOXP1 syndrome, and DDX3X syndrome. Areas of focus include biomarker discovery, natural history studies, and clinical trials.
In addition to valuable contributions to science, the Seaver Center team works hard to ensure study participation is an enjoyable and low stress experience. When reflecting on their experiences, Seaver Autism Center families often recall a sense of warmth and trust.
One parent, Sakia, felt touched by how happy her son is whenever her family arrives for a visit: “As soon as he walks in, he’s running in, running into rooms, and it doesn’t bother anybody. Everyone is very welcoming.”
Paige Siper, PhD
In this Q&A, Paige Siper, PhD, Chief Psychologist of the Seaver Center, explains how research studies are conducted, the benefits of participating, and how you or someone you know can get involved.
What happens at a research study visit?
Research visits include standardized assessments administered by the clinical research team. Our multidisciplinary team spans psychiatry, psychology, and neurology, including a robust training program of psychology and psychiatry students and fellows. For idiopathic autism studies, gold-standard diagnostic testing, including the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) is administered to determine eligibility. For studies in genetic syndromes, results from genetic testing are reviewed to confirm eligibility. Most studies include cognitive and adaptive assessments. Results from clinical assessments are summarized in a research report and include personalized recommendations provided to families free of charge. Many research studies include our biomarker battery which includes electroencephalography (EEG), eye tracking and, in certain studies, brain imaging using functional magnetic resonance imaging (fMRI).
What are the benefits of participation?
In line with the Seaver Center’s mission, the goal of the clinical research program is to enhance the diagnosis of autism and related disorders, discover biological markers, and to develop and disseminate breakthrough treatments. Research participation is necessary to achieve these long-term objectives.
In addition to helping future generations through medical advancements, as mentioned above, research participants receive results from clinical testing in the form of a research report with recommendations at no cost. These reports may be used to access necessary services both within and outside the school setting.
Who can participate?
Every study has specified enrollment criteria and therefore eligibility varies by study. The Seaver Autism Center has a number of ongoing research studies and encourages you to reach out to the team to discuss studies you or your child may be eligible for.
How do you get involved?
To learn more, call the Seaver Autism Center at 212-241-0961 or email theseavercenter@mssm.edu and one of the clinical research coordinators will provide you with more information.
You may also stay in the know by signing up for the Seaver Autism Center newsletter and by following the Center on social media.