PORTLAND, SCARBOROUGH, and WESTBROOK, Maine — Drs. Matthew Siegel, M.D., and Susan Santangelo, ScD, of Spring Harbor Hospital in Westbrook, and Maine Medical Center Research Institute in Portland, have been awarded a two-year, $1.2 million grant to develop a first-of-its-kind nationwide hospital collaborative to study children who are most severely affected by autism.
By bringing together the experience and expertise of autism specialists from six nationally recognized inpatient facilities, this research network will provide a unique platform for studying those children and adolescents most severely affected by this disorder. Until this time, most large studies of individuals with autism have included only participants who are less severely affected.
The new research network, the Autism and Developmental Disorders Inpatient Research Collaborative (ADDIRC), is made up of specialized inpatient child psychiatry units that exclusively serve children with autism and other developmental disorders.
Drs. Siegel and Santangelo and their colleagues across the network seek to better understand the characteristics and complex challenges faced by these children and their families, with the goal of developing improved treatment protocols. The network will also provide a unique platform from which to gain new insights into the genetic pathways that underlie language impairments, intelligence, and psychiatric illness in autism. Such information may spur more individualized treatments.
“There is so much that remains unknown about autism,” says Dr. Siegel, “and those most severely affected by the disorder both deserve our attention and are likely to provide us clues for understanding the core features of autism. We are thrilled to have the support of our partner foundations and the other participating institutions.”
The study was co-funded by the Simons Foundation and the NLM Family Foundation, both national leaders in supporting autism research.
“We are extremely supportive of the approach developed by Drs. Siegel and Santangelo,” says Marta Benedetti, Ph.D., Senior Scientist at the Simons Foundation. “Their commitment to this underserved patient population is unparalleled and we look forward to the medical and research community being able to utilize the unique data collected by the network.”This new collaborative places Spring Harbor Hospital and Maine Medical Center Research Institute at the center of national efforts to better understand autism. Data from the initial study undertaken by Dr. Siegel, the Principal Investigator, and his colleagues will be coordinated and analyzed at MMCRI. The study will seek to enroll 500 subjects during the two-year period, and Spring Harbor Hospital is the coordinating clinical site.
Participating institutions and co-investigators include:
- Bradley Hospital, Eric Morrow, M.D., Ph.D., East Providence, RI
- Hampstead Hospital, Steffanie Brackett, Psy.D., Hampstead, NH
- Sheppard Pratt Hospital, Desmond Kaplan, M.D., Baltimore, MD
- The Children’s Hospital Colorado, Robin Gabriels, Psy.D., Aurora, CO
- Western Psychiatric Institute & Clinics, Carla Mazefksy, Ph.D., Pittsburgh, PA
“The Simons and NLM Family Foundations have demonstrated their dedication to driving fundamental discoveries regarding the causes of autism and novel ways to improve its treatment. We share their commitment to these goals and are honored to be receiving their support and guidance in this important work,” said Donald St. Germain, M.D., Director of MMCRI. “Drs. Siegel and Santangelo bring a wealth of clinical and scientific experience to their leadership roles in this effort, and they are partnering with other outstanding institutions and investigators in their efforts to deliver truly groundbreaking insights that will favorably alter the course of this disorder.”
“In the short term, this will raise the standard of care in the participating hospital units and inform best practices for psychiatry units in the U.S. and abroad,” says Santangelo. “Ultimately we intend to make this study the launching point for future autism research that will unlock some of the mystery
surrounding this disorder.”
Siegel and Santangelo have already begun building an infrastructure to support the participating institutions in this research. From there, subject recruitment will begin in February 2014 with a goal of rigorous data collection and synthesis over the ensuing year.
“There is a great deal of uncertainty surrounding autism,” says Siegel. “What is certain, however, is that individuals with autism and their families deserve a more refined understanding of their condition, and the promise of more targeted treatments.”