The New Jersey Language and Autism Genetics Study (NJLAGS)
Rutgers University
Phone: (732) 445-1224
Fax: (732) 445-1636
Email: autism@biology.rutgers.edu
What is this study about?
Dr. Linda Brzustowicz and colleagues at Rutgers University are conducting a study that looks at how genes influence the development of autism. The National Institute of Mental Health (NIMH) is sponsoring this research as a part of their national effort to learn more about the genetics of autism spectrum disorders.
This research is the first large genetics study to look at the connection between language-based learning problems and autism in the state of New Jersey. Previous research has suggested that families that have a member with the diagnosis of autism are more likely to have other family members who have had language problems. Our project's goal is to better understand this occurrence by gathering mental health information, language information and genetic material (DNA), from people who either have autism or are related to someone who has autism.
Dr. Brzustowicz will use the information gathered to better understand the link between language, genetics, and autism. The information learned from this study can lead to future research on the development of more effective treatments and methods of prevention in the future.
Who
can participate in this study?
This is a 5-year study that approximately 150 families will participate in.
Families may participate if:
The family includes a person over the age of three who has been diagnosed with autism.
The individual with autism does not have a known genetic cause such as Fragile-X or Rett's syndrome.
The family includes one member other than the individual with Autism who has a history of language or learning difficulties.
The family consists of at least three other family members willing to participate.
Participating family members are willing to provide blood samples for the isolation of genetic material (DNA).
Family members are willing to participate in educational testing in the family's home.
English is the primary language in the home.
What
will families be asked to do if they choose to participate in this study?
If a family is interested in participating in the study, the family can contact the study to go over the initial screening script and questionnaire. This first step provides families with an opportunity to find out more about the study, ask questions, and learn if their family is eligible to participate. The full script and questionnaire last approximately 30 or 40 minutes, but can be scheduled at a convenient time including evenings.
If the family is eligible and wanting to participate then the first visit with the study would be scheduled. A parent or guardian will be asked to bring the individual with the diagnosis of autism to The Autism Center at The New Jersey Medical School, in Newark, for an evaluation. During the clinic visit, the individual with autism will receive a complete physical assessment by a research physician, give a blood sample, and take some diagnostic tests to verify the diagnosis of autism.
We will conduct a language/speech assessment at your home on an individual from the family who has speech and/or language difficulty. The language tests will be used to verify that there is someone in the family who has a language problem.
Finally, at your home, the rest of the family members who participate will be asked to give a small blood sample that scientists will use as a source of genetic material, or DNA. Each family member will also be asked to complete questionnaires and the educational test battery.
What
are the risks of taking part in this study?
Participating in any study has some risks. The risks involved with taking part in this study are low.
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Blood draw: There is a possibility that when getting blood drawn from a vein there may be a slight pain, and a small amount of bleeding or bruising at the site where the needle is inserted. The people who are responsible for drawing blood for this study are professionals who are used to working with individuals of all ages and abilities. They will do all they can to make sure the blood draw is a pleasant experience. |
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Tests and Assessments: There is a possibility that taking the tests or assessments may cause some mild stress. These tests are similar to some standardized tests taken in school. If for any reason these research tests indicate there is a need for additional clinical testing then a study doctor will talk to you about this and provide you with a referral for additional testing and treatment. |
What
are the benefits of participating in this study?
By participating in this study you have the opportunity to help scientists to better understand the genetics of autism and language. Though our findings will not be directly beneficial to your family right now; the things we learn will be very important in understanding the overall development of autism. In the future these findings may lead to better interventions and treatments for individuals with autism. If we do learn of anything that will be helpful to the treatment or betterment of your child with autism or other family members then we will definitely tell you about these findings.
In addition to helping us learn more about the genetics of autism and language you will be helping future NIMH approved and reviewed scientists in the same endeavor. By providing a blood sample and doing the assessments for this project you will be anonymously adding your information to the National Institute of Mental Health's (NIMH) genetic repository for autism. This means that future scientists will be able to apply to the NIMH to use the material for future research studies.
Contact
Us
If you have any questions, or are interested in participating in this research study please contact us.
The New Jersey Language and Autism Genetics Study (NJLAGS)
Department of Genetics, Rutgers University
145 Bevier Road
Piscataway, New Jersey 08854
Phone: (732) 445-1224
email: autism@biology.rutgers.edu