Welcome to our series on research. We continue with information about the WONDER study
Welcome to our series on research. We continue with information about the WONDER study Seattle Children’s researchers want to better understand social brain development in infants during the first three years of life. Drs. Fred Shic and Sara Jane Webb, Center for Child Health, Behavior and Development, are the co-investigators of this study. Read full post »
This blog will be our first in a series regarding Research. We welcome guest author Soo Jeong-Kim, MD Medical Director of the Seattle Children’s Autism Center. Dr. Kim explains why we should care about research, and what to consider before participating. In our next blog, we will detail a current research opportunity available in the area.
Soo Jeong-Kim, MD Medical Director of the Seattle Children’s Autism Center
We know a great deal more about autism than our previous generation did. For example, we know autism is not caused by poor parenting. We know some interventions are safer and more effective than others. We know these because of research. Many important questions are being asked by families and doctors and researchers are trying to answer these questions by gathering evidence, making hypothesis, and systematically investigating to support or reject the hypotheses.
While children and families participating in research studies may not receive direct benefit from the study, research will help us to understand better about what’s going on in our children with autism and what can be done to help them, so that we do not repeat the past, such as blaming parenting for autism or trial of therapies or medications that are proven to be ineffective or even harmful.
What should we consider before participating in research?
Research cannot be done without participation of individuals with autism and their families. Researchers may not able to answer research questions when they do not have enough participants. Most research studies require dozens and sometimes several hundreds of participants to be able to answer questions.
When you decide to contribute to the research, you should be informed:
1. You may not receive direct benefit from the participating in the study. It’s because the study is just to learn more about what is going on with our children with autism (e.g., how much physical activities your child is doing per typical day) or it’s because your child is participating in a clinical trial study that requires half of participants to be randomly assigned for the “placebo” group. While your child or family may not receive direct benefit, your participation will result in better understanding and may also potentially lead to a new treatment intervention (e.g., therapy or medication).
2. Sometimes it takes years before researchers to be able to answer research question. It is not uncommon researchers to repeat the studies to make sure the results from the original study were not by chance. It is known that even with the best evidence, it may take years to develop new treatment intervention.
3. Participation in research studies should be voluntary and after weighing risk and benefit ratio carefully.
Ten years ago the Seattle Children’s Autism Center was no more real than a dream.
But in the time since that dream has become a reality, the Center has served over 13,000 unique individuals through over 150,000 patient visits. How is that for transformation? Read full post »
On Friday June 8th 2018, the UW Center on Human Development and Disability supported the Collaborative Research Area Biological Basis of Autism Seminar on Females with Autism Spectrum Disorder: Behavior, Brain and Genetics. Speakers included Karen Barnes PhD , Tychele Turner PhD , and myself . For this Blog, I invited Karen Barnes to join me to discuss the updated rates of autism in females as well as sex differences in autism. Read full post »
Dr. Jill Locke’s research focuses on school-based social skills interventions for children with ASD. Her research highlights the importance of the intervention setting and how to match school resources to the needs of the child. Successful school intervention programs are ones that can be maintained Read full post »
As part of the research discovery series, Autism Speaks is presenting Discovery to Solutions, which involves a panel of scientists moderated by Autism Speaks’ Dr. Dean Hartley, Senior Director, Genomic Discovery, and Translational Sciences. Panel members include our own Dr. Mendy Minjarez and Dr. Raphael Bernier.
Read full post »
The Seattle Children’s Autism Center Research Team is Hosting a Research Camping Adventure!
We would love to have you come join the fun and participate in autism genetics research! The SPARK and PANGEA studies are exploring genetic differences related to autism. Families who attend the family fun day will be able to complete study participation for one or both studies in a single day!
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A recent article published in JAMA Pediatrics (2018; Associations of Prenatal Ultrasound and Autism Spectrum Disorders[i]) has re-drawn attention to ultrasound as a potential factor that may cause ASD. My colleague Dr. Pierre Mourad and I want to take a moment to highlight some thoughts about this research.
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One of the biggest challenges parents face after receiving an autism diagnosis is what their child’s treatment plan should include.
Taking into consideration the time, money, effort, commitment, and hope parents place in any number of therapies and interventions, providers are still unable to reliably predict which treatments will be effective for which children.
This often leads parents to simultaneously employ various treatment options without any assurance that they have a good fit for their child. We’ve reported that there are current studies underway toward this end and want to share one such study with you today.
In this study of twenty young children with autism, scientists used functional magnetic resonance imaging (fMRI) to measure changes in brain activity before and after receiving sixteen weeks of Pivotal Response Treatment (PRT), a play-based, evidence-based behavioral treatment focused on development in core deficits associated with autism.
The researchers wanted to know if they could predict which children would show improvement with the PRT treatment by looking for neurobiomarkers – measurable objective characteristics in the brain. They did indeed identify a number of characteristics in brain regions associated with social information processing and social motivation that predicted the success of PRT.
This study is a step towards being able to answer the question: How do we know if a child will respond to treatment? Having the ability to predict whether a child will respond to a particular treatment will allow for the child to receive the intervention that they will most likely respond to, which will save families resources, time, and frustration. It also allows for treatments to be analyzed and possibly distilled down into the core features that make them successful for children, increasing a treatment’s effectiveness and usefulness to families.
A copy of the original study can be found here.