MIND, CHARGE, APP, and IANRESEARCH: Becoming part of the Autism Research
MIND Institute is probably one of the most interesting and important Autism research networks that we have, MIND and IANRESEARCH. MIND is responsible for such research projects as CHARGE and APP. IAN PROJECT is a product of the Kennedy Krieger Institute.
Both IANRESEARCH and MIND are responsible for over well over 400 research projects, separately. They are also great resources for any family with a child that has Autism. Their contributions to science and research are unmatched.
UC DAVIS MIND INSTITUTE
UC DAVIS MIND Institute was started by 6 families, a number of years ago. All 6 families were affected by Autism in some way and were struggling with it. Per their website: “The MIND Institute is dedicated to finding treatments; causes and preventions; and providing education for neurodevelopmental disorders. These families envisioned a place where experts from every discipline related to brain development would work together to ensure better futures for the one in twenty Americans who are affected with neurodevelopmental disorders.”
MIND Institute does research on Autism Spectrum Disorders, Fragile X Syndrome, ADD/ADHD, Chromosome 22q11.2 Deletion Syndrome and Down Syndrome. Not only is this institute responsible for such research as CHARGE (Childhood Autism Risks from Genetic and Environment), and APP (Autism Phenome Project); but they are also responsible for the Massie Family Clinic, The Social Skills Training Program and an ADHD Clinic.
Charge is a “comprehensive study of environmental causes and risk factors for Autism and Developmental Delay.” Charge was launched in 2003 in California and was the first of its kind of study. Among Charges accomplishments are that they were the first to identify a link between our genes and environmental causes.
They are sponsored by:
-The National Institute of Environmental Health Sciences
-The U.S. Environmental Protection Agency
-The MIND Institute
-The Allen Foundation
-Cure Autism Now
-The National Institute of Occupational Safety and Health
They have been responsible for such studies as:
-Maternal Metabolic Conditions and Risk for Autism and Other Neurodevelopmental Disorders
-Maternal Influenza or Fever During Pregnancy Associated with Autism or Developmental Delays
-Tipping the Balance of Autism: Potential Mechanisms Linking Pesticides to Autism
-Autism Spectrum Disorders in Hispanics and non-Hispanics
-Parental Occupational Exposures and Autism Spectrum Disorders
-Month of Conception and Risk of Autism
If you live in California and want to get involved in the research, contact Charge. Your child must be between the ages of 24 and 60 months of age, have English or Spanish speaking parents, and live with at least one of their biological parents. There is, of course, and evaluation in order to be accepted.
APP is “the largest and most comprehensive assessment of children with Autism ever attempted. It aims to distinguish among recognized subgroups or phenotypes of Autism. It aims to link different forms of Autism with distinct patterns of behavior and biological changes.” App was started by MIND Institute Research Director David G. Amaral in 2006 with only 55 children and 52 other MIND scientists. Today it has grown to be a large study.
Per APP’s website they have “generated an unprecedented amount of data on children with Autism - much of this is still being analyzed. Some of the results obtained already include:
1. Girls with Autism have different patterns of altered brain development than boys.
2. About 15% of boys with Autism have abnormally enlarged brains starting around 6 months of life.
3. The immune system of some children with Autism and some parents of the children is different. Studies are ongoing to determine whether this may contribute to the cause of Autism.
4. Different subsets of children with Autism have distinct patterns of metabolites in their blood that may be related to the cause of their Autism and may be a target for treatment.”
IANRESEARCH and IANCOMMUNITY
If you ever have a question or need to find a bit of information IANCOMMUNITY by IANRESEARCH is a great resource to refer. IANRESEARCH is a research database that publishes its data on its IANCOMMUNITY. It was established in 2006 by the Kennedy Krieger Institute. The websites were launched in 2007. IANRESEARCH is a website that parents can register with and participate in research studies nationwide. My family has been a part of IANRESEARCH studies for years. It is mostly done via the internet, though some research studies are more invasive than a simple questionnaire. I implore all parents to sign up with IANRESEARCH.
The network provides many different services to many different families across the nation. As they claim, they have been able to help families by completing over 300 research studies themselves. Researchers nationwide work with IANRESEARCH data to help learn about the effects of factors such as genetics, environment and treatment on Autism and Autistic individuals.
Even though IANRESEARCH is ran by the Kennedy Krieger Institute, it is funded by Autism Speaks, The Simon Foundation, and grants from The National Institute of Mental Health. At Ian their goal is to help parents of Autistic children understand the research and research process easier; they also help parents keep up with the latest information and overall, just improve the quality of life that our children have.
I believe in their mission given the Kennedy Krieger’s Institute header on their webpage reads:
“We are all born with great potential. Shouldn’t we all have the chance to achieve it”
No truer words have been read. I implore you to participate in research, look into these projects and research studies. Be part of the awareness and acceptance. Be part of the understanding.