The University is taking the lead in a new program designed to study and uncover the mysteries of autism.
Catherine Lord, director of the University’s Autism and Communication Disorder center, hopes that a new research approach will come closer to finding a cure for the cognitive disorder that affects between one and three out of every 500 children, according to Center for Disease Control estimates.
Lord is heading a team of 11 universities, including the University of Michigan, in the Simons Simplex Collection Autism Research Initiative – a study that aims to create a database of DNA samples and personal histories from 3,000 patients from the ages of five to 18 with autism. It hopes to discover the root causes of the range of neurological disorder that fall under the umbrella of autism.
The database bank will allow researchers unprecedented access to multiple patient histories in efforts to find patterns, Lord said.
As of now, the project is still in its beginning stages. Only about 20 samples have been collected at the University’s clinic.
The initiative is expected to cost $10 million in its first two years.
“The broader goal is the try to enlist the help of all the families (affected by autism) across the U.S. to participate, so when we find things of interest we can go back to them to get further samples or find out more about height or other aspects that could be linked to autism,” Lord said.
A database called the Autism Genetic Resource Exchange already maintains a database of the genetic information of autistic people. But unlike that network, the Simons project will only collect information from patients who are the only child in their family to have autism.
Lord said the new database will help find different causes for the disorder that aren’t apparent by studying heredity alone. In addition to taking DNA samples, researchers will interview the parents of the child for information about the child’s birth, the onset of symptoms and the child’s behavior patterns.
“Fifteen years ago, when the first push for genetic autism was starting, everyone thought it was one gene and it would be easy to solve the problem, but it is clear there is not one gene but multiple combinations,” Lord said. “This approach also assumes that some genetics of autism are not really inherited but just a coincidence, and hopefully there is a pattern there that we can find with the use of this database.”
According to Lord, the method behind collecting and sharing data is very restricted to ensure the privacy of participating patients. Each clinic will give the patient’s information in code, so outside researchers cannot match data to any individual.
If scientists find a possible trend in the database, they can contact the home clinic and ask to contact the patient for further study.
“What we are trying to do is protect peoples’ privacy but have the clinics as an intermediary,” Lord said. “If there is anything that comes up from these studies then you will know where to find these patients.”
Along with Gerald Fischbach, the scientific director of the Simons Foundation, Lord began discussing the project with other researchers in June 2003.
Prof. Edwin Cook at the University of Illinois at Chicago was one of the many who helped start the project.
“(The Foundation) contacted our university because they know we have a very active autism clinic and an active interest in autism genetics and an interest in participating in collaborating efforts,” Cook said.
Cook said he takes monthly train trips to Ann Arbor to visit and observe the Michigan clinic.
“Dr. Lord is the world’s authority on the diagnosis of autism,” Cook said.
Lord was optimistic about the project’s progress.
“I think there is a huge amount of energy going into it,” Lord said. “I don’t think there will be a cure tomorrow, but what is encouraging is that there have been some great findings and we might have a possibility of finding something here.”
The other universities working to develop a database of genetic information about autism patients
University of Washington
University of Illinois at Chicago