--Excerpted from the Autism Society of America's Web site http://www.autism/society.org.
The international collaborative Network on Biology and Brain Development in Autism was established in 1997 by the National Institutes of Health through the work of the Autism Society and their parent letter writing campaign. With the goal of solving the "mystery of autism" it puts the best scientific methods, researchers and tools together in a collaborative effort. The Network is co-funded by the National Institute of Deafness and Other Communication Disorders (NIDCD), the Office of the Director of the overall National Institutes of Health (NIH), and the NIH Office of Alternative Medicine (OAM).
The following is a list of the Network studies. There is no charge for any service provided as part of the research studies. All eligible subjects receive free diagnostic and, neuropsychological evaluations. No treatments are provided as part of this Network. Because of research requirements, each study has eligibility criteria for participation. Anyone interested in participating should contact the study coordinator for more in-depth information.
Genome Studies of Families with More than One Child with an Autism Disorder
One of the best ways to find the genes for autism is to perform a genome-wide screen for autism susceptibility genes, using DNA from families with more than one child who has autism disorder (autism, Asperger's etc.). These families are known as multiplex families. The University of Washington and Yale University (see below) both need your help in finding the autism gene(s) through a genome search. Both projects include scientists and clinicians who have found genes for other disorders. They are among the most experienced in the world of diagnosing autism. Both projects have met all NIH requirements for safety and confidentiality of information. DNA from genetic studies will be preserved so that it will be available for later study by these and other scientists. More than 400 families are needed.
* The University of Washington, Seattle
Dr. Geraldine Dawson (with the Universities of Alaska, Florida, Montana, Oregon, and Vanderbilt University, Tennessee Contact: Cathy Brock; Telephone: (800) 994-9701 E-mail: email@example.com
Participants will receive free diagnostic and neuropsychological evaluations. The study will pay for travel and hotel costs for multiplex families. In addition to the genetics studies, this project will study precursors of speech and language, and brain structure and function' in response to speech and social situations. This project also needs first and second birthday videos of children who have autism, and lost speech and social skills during the preschool years.
* Yale University, New Haven, Connecticut
Dr. Fred Volkmar and Dr. Catherine Lord (with the University of Chicago, the University of California at Los Angeles (UCLA), Oxford University, and the University of London (plus others in England, France, and Germany). Contact: Kathleen Koenig, R. N. Telephone: (203) 785-3488 E-mall: firstname.lastname@example.org
All subjects receive a free diagnosis and a neuropsychological evaluation--including a parent conference and general treatment recommendations. This project is focusing on the of high functioning autism and Asperger's disorder. Studies include the underlying genetics, neuropsychological profiles, and brain structures and functions for the various autism disorders. A follow-up study of children diagnosed at age 2 to 3 will identify early predictors of autism. The European Consortium, linked to the Autism Collaborative Network through this project, is based at Oxford and the University of London, and is funded by the Medical Research Council of Great Britain and the Wellcome Fund.
Other Genetic Studies
* The University of Rochester
Dr. Patricia Rodier (with York University, Ontario, Canada) Contact: Dr. Rodier Fax: (716) 244-2209 E-mall: email@example.com
This project uses an animal model to test a new theory that autism may be caused by exposure to an environmental toxin very early in pregnancy and/or a genetic susceptibility. The studies also evaluate families with more than one child who has autism for specific genetic mutations expected on the basis of this new environmental theory.
* The University of Utah
Dr. Reed Warren and Dr. William McMahon (with Utah State University and the University of Iowa) Contact: Dr. William McMahon Telephone: (801) 588-3559 E-mail: firstname.lastname@example.org
This project tests the idea that autism is caused by an immunogenetic susceptibility that predisposes individuals to autism and may make infants susceptible to pathogens during pregnancy that would be harmless to others. This research is based on the immune and autoimmune abnormalities found in a large subgroup of persons who have autism and/or their parents. Other studies in this project focus on other aspects of autism subgroups, including the study of brain structure and function, particularly executive function, and a study of the enlarged head sizes found in those who have autism.
Autism as a Complex Information Processing Disorder
* The University of Pittsburgh
Dr. Nancy Minshew (with Carnegie Mellon [Pittsburgh] and Case Western Reserve [Cleveland] Universities) Contact: Dr. Nancy Minshew Telephone: (412) 624-0818 E-mail: email@example.com
This project tests the assumption that autism results from abnormal development and dysfunction of the prefrontal cortex. Drawing on an outstanding brain imaging and neuropsychology team, this project will examine evidence of strengths in basic brain functions and deficits in complex information processing. A cross-sectional study of adults and a longitudinal study of children will assess maturation of language, cognitive abilities, and the neural circuitry underlying both.
Language and Communication Projects
Although the study of language and communication is an integral part o fall the projects (see Dawson, Minshew, and Volkmar listed earlier), two of the projects are focused specifically on defining the developmental course and brain functions related to language and communication.
* University of California at Los Angeles
Dr. Marian Sigman Contact: Margie Greenwald Telephone: (310) 825-0575 E-mail: firstname.lastname@example.org
This project will determine the biological and environmental contributors to social communicative competence in those who have autism. One study will use functional magnetic resonance imaging (FMRI) to learn how regions in the brain in people who have autism work in tests of empathy, facial expressions, and prosody (the rhythm and accents of speech). Another study will compare two different methods for accelerating language development. Another will assess social and adaptive competence in adolescents and adults who have autism whose social, communicative, and symbolic skills were measured at ages 3 to 5.
* Eunice Kennedy Shriver Center
Waltham, Massachusetts Dr. Helen Tager-Flusberg and Dr. Susan Folstein (with the University of Massachusetts, and Tufts New England Medical Center) Contact: Cindy Aweimrine Telephone: (617) 642-0180; Fax: (617) 642-0185 E-mail: email@example.com or firstname.lastname@example.org
This project will study the genetics, behavioral characteristics, developmental course, neural processing, and neuropathology of autism--particularly as they relate to language and social understanding. This will include study of the Theory of Mind:
* An in-depth study of adolescents who have autism whose IQ's are below 40;
* Structural and functional imaging of language-related brain regions.
In addition to free diagnostic, and neuropsychological evaluations, eligible participants will receive free language evaluations. Travel costs from Massachusetts and surrounding areas to the Shriver Center (10 miles west of Boston) will be covered.
Hearing in Autism
* Albert Einstein College of Medicine
Dr. Michelle Dunn Contact: Dr. Dunn Telephone: (718) 430-2459; Fax: (718) 430-8785
This project will examine the integrity of auditory processing in children who have autism through behavioral (audiometric), physiologic, and electrophysiologic (event-related potentials ERP) measures, and relate it to later language development This project may represent the most thorough assessment of hearing yet undertaken in autism.
Movement and Sensory Processing
* University of Colorado Health Sciences Center, Denver
Dr. Sally Rogers and Dr. Bruce Pennington Contact: Dr. Sally Rogers Telephone: (303) 8714403 E-mail: sally, email@example.com
This project is measuring sensory processing in adults and young children who have autism and Fragile X syndrome. Some of the most sophisticated brain imaging technology available will be used to test hypotheses regarding auditory memory, cortical hyper reactivity and other aspects of brain functioning in autism. This study conducted over time, will measure early sensory, affective, and the motor abilities of preschool children, and assess their impact on later attentional and social functioning. A related study (Johns Hopkins University) will assess language and social functioning of relatives in families with more than one child who has autism.
NIH STUDY SUBJECT RECRUITMENT CHILDREN WITH CEREBRAL PALSY
The Human Performance Laboratory at Barnes-Jewish and St. Louis Children's Hospitals in St. Louis, Missouri, is seeking children with cerebral palsy (CP) to serve as controls for an NIH-FUNDED research project.
WHO: Children with spastic diplegia CP must be 4 to 25 years of age and ambulating independently, or with crutches or canes (orthotics are acceptable).
PURPOSES: To study the effectiveness of the selective dorsal rhizotomy (SDR) surgical procedure and develop an objective method to help select candidates.
METHODS: Four groups of children are being recruited.
Group 1 will undergo the SDR and have intensive physical therapy (PT). Group 2 will not undergo the SDR but will have intensive PT. Group 3 will not undergo the SDR and will continue with their current PT. Group 4 will be children with able bodies.
We are currently recruiting children for Groups 2 and 3. No surgery will be performed on these children. Children who are randomly assigned to the Group 2 will have intensive PT (3-4 times/week) in their hometown paid by the grant. Children will be tested. 4 times over a 22 month period. Tests will include an analysis of gait, strength and spasticity (ankle, knee, hip), oxygen uptake, gross motor function measure (GMFM) and disability questionnaire. All tests will be paid by the grant. Substantial participation incentives are provided to offset patient expenses and minimize attrition.
For more information please contact:
Sandy A. Ross, MHS, PT, PCS Senior Physical Therapist Barnes-Jewish and St. Louis Children's Hospitals Department of Rehabilitation at Washington University 4555 Forest Park Parkway St. Louis. Missouri 63108
Phone: (314) 454-8335
Fax: (314) 454-5388
E-mail: firstname.lastname@example.org E-mail for the Human Performance Lab: roadrunner.carenet.org (grant summary and more information, click on "Subject Recruitment")