Welcome to our series on Research. We continue with information about the WONDER study. Read about more research opportunities in our next research blog.
Who? Families with an infant under the age of 6 months with an older biological sibling (whole or half) with Autism Spectrum Disorder, and who use English as a primary language.
What? Seattle Children’s researchers want to better understand social brain development in infants during the first 3 years of life. Over the course of 3 years, there will be 5 in-person study visits at our research lab in Seattle. During the visits, researchers will: record brain activity and eye movement while showing your child pictures and videos, engage your child in play-based activities to monitor child development. Feedback about your child’s performance on developmental assessments will be provided. One caregiver will be asked to complete questionnaires around the same time as the study visits, and 4 phone interviews over the course of the study. Study visits will vary in length from 1- 2 ½ hours. Phone interviews and questionnaires will last approximately 1-2 hours. Appointments will be scheduled at a time that works well for your family. Families may receive up to $410-$425 by the end of the study for completing all the study activities. Children will receive a small toy at each visit. Parking validation is provided.
When? This study is currently enrolling participants. Contact the study team . Drs. Fred Shic and Sara Webb, Center for Child Health, Behavior & Development, are the co investigators of this study.
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 »