National Experts and Foundations Gathered in Portland, Maine
to Launch Collaborative to Study Autism
The Autism& Developmental Disorders Inpatient Research Collaborative is uniquely positioned to uncover the answers to some of the most difficult questions in the treatment of autism.
On September 28th, 2012, leading autism experts gathered for a one-day summit in Portland, Maine, to launch a powerful new Collaborative of specialized psychiatric hospital units. This summit brought together experts in the hospital treatment of children with autism and serious behavioral disturbances from throughout the United States, as well as four esteemed scientific advisors and the three major funding organizations for autism research - the Lurie Family Foundation, Autism Speaks and the Simons Foundation.
Matthew Siegel, M.D., Director of the Developmental Disorders Program at Spring Harbor Hospital, founded the Autism and Developmental Disorders Inpatient Research Collaborative to foster research and clinical advances for children with autism. The idea for the Collaborative was sparked when Dr. Siegel published “Specialized Psychiatry Units for Children with Autism and Developmental Disorders: A United States Survey,” in 2011 in the Journal of Autism and Developmental Disorders.
“We have over 1,400 children with autism admitted to our Collaborative of specialized hospital units a year,” Sigel stated. “This offers a powerful platform to perform clinical trials and develop diagnostic tools to advance the treatments available for this severely affected population.”
During the summit, the group explored the unique opportunities for research presented by the hospitalized population. A program of research was outlined that includes:
1) Characterization of the inpatient population;
2) Rigorous phenotyping and biobanking of samples to better understand the heterogeneity of the autism population;
3) Specific focus on the non-verbal population, an under-studied group that comprises 25 percent of the inpatient population; and
4) A focus on self injurious behavior, a high burden problem that is poorly understood and which the hospital units have the unique expertise and setting to study.
“Our program of research will begin with an initial proposal to the three funding organizations to develop the phenotyping and bio-banking protocols,” said Siegel.
The Collaborative will also consider becoming a medicine development network for autism by creating an efficient platform for the rapid study of novel compounds. This strategy could decrease the risks and barriers faced by pharmaceutical companies when they attempt to recruit patients to outpatient trials.
The summit was sponsored by the Lurie Family Foundation, Maine Medical Center Research Institute and Spring Harbor Hospital.
Clarence Schutt, Ph.D., Director of the Lurie Family Foundation, remarked, “We supported this summit because we immediately recognized the unique potential the special hospital units have to use their expertise to answer questions that are difficult and expensive to study in the outpatient arena. This includes the mechanisms of sleep disturbance in autism or the effect of communication interventions on serious behavioral problems.”
For more information about the Collaborative, visit www.inpatientdevelopmental.com/index.html.
For more information on the research of Dr. Matthew Siegel:
Pediatric Autism Research Team at Spring Harbor Hospital