Thinking About Participating in Autism Research? Here’s What You Need to Know.
Over the past few decades, our knowledge about autism has expanded tremendously, thanks to the many research studies that have been conducted. Through research, we have begun to learn about autism’s causes, effective treatments, and how to best diagnose autism. If you are a parent of a child with autism, maybe you’ve considered having your child participate in a research study. But you might also have some reservations about participating, or maybe you’ve wondered: what’s in it for my child and our family?
When a child or adolescent enrolls in a research study about autism, sometimes there is a direct benefit to the family, such as getting a diagnostic evaluation for free or more quickly than you might have otherwise, or getting access to a new promising medication or therapy that is not yet widely available. But other times, the direct benefits to the family are less clear. In other words, sometimes the main benefit of participating in research is for the greater good (e.g., advancing the field of autism) rather than helping the individual child or family who participates. In these cases, you and your child might not get anything personally out of participating. That said, many families choose to participate in autism research because of the chance to contribute to the field, knowing that the results of the study may be very important to the larger community. Participating in a research study can be a chance to indirectly help others with autism now and in the future.
Many families feel more comfortable participating in research when they know about the safeguards that are in place to minimize risks to the individual participants. Before starting a new research study, an Institutional Review Board (IRB) reviews the study in order to identify and minimize any potential risks to the participants. Whenever you participate in a research study, you will receive specific information about the study’s purpose, what your participation would entail, possible risks and benefits to participants, steps the researchers will take to protect your confidentiality, and so forth. You will also have a chance to ask the researchers any questions you have about the study. It’s important to know that participation in research is always voluntary, and you will need to give your informed consent prior to participating in a study.
If you’re located in the Seattle area and want to learn more about current autism research opportunities, there are a number of research studies that are actively recruiting participants at Seattle Children’s Research Institute and the University of Washington. The following are a few examples. If you think your child may fit the description of one of these studies and you’d like to learn more, feel free to contact the research coordinator listed.
- Autism Genetics Study (SAGE): A study designed to learn more about the genetics behind autism. Recruiting individuals with Autism Spectrum Disorders (ASD) ages 2-35. Contact Libby Bliss at 206-884-1488 or firstname.lastname@example.org for more information.
- Guanfacine: A study investigating whether a medication called Guanfacine helps treat hyperactivity and impulsive behavior in children with ASD. Recruiting children ages 5-13 who have both ASD and hyperactivity. Contact Denise Ward at 206-884-1168 or email@example.com for more information.
- Twin Study: A study about biological and behavioral traits associated with the genetics of autism. Recruiting twins (fraternal or identical) ages 5-30 years, if one or both twins are diagnosed with ASD, or if both twins are developing typically. Contact Anna Kresse at 206-616-8057 or firstname.lastname@example.org for more information.
- Girls Study: A study investigating the nature of ASD in females. Recruiting girls with ASD ages 7-17. Contact Katy Ankenman at 206-616-3410 or email@example.com for more information.
These are just a few examples. There are many other studies at Seattle Children’s and UW that are currently recruiting participants. You can learn more about current studies here.
At Seattle Children’s, we also maintain a registry of families who are interested in being contacted about participating in future research studies. Signing up for the registry does not mean that you are signing up to be in a study; rather, it means that you would like to be contacted to consider participating in a future study, if a new study begins and your child may be a good match. If you would like to sign up for the registry and have not already done so, you can do so by: 1) filling out a research registry form if your child is currently being seen at Seattle Children’s Autism Clinic; 2) contacting research coordinator Libby Bliss at 206-884-1488 or firstname.lastname@example.org to request she mail you a form to complete and return; or 3) If you are already participating in an autism research study at Children’s, the study coordinator can add you to the Registry at your request.
For families who are reading our blog from afar, a great way to find out more about research opportunities in your area is through the Autism Speaks website (http://www.autismspeaks.org/science/participate-in-research).
Whether or not you decide to enroll in a study is a personal choice for each family to decide. No matter what you choose, know that many research studies across the nation and world are currently tackling numerous big questions about autism. Through ongoing research, we’ll continue to learn important information about autism, which will ultimately improve how we diagnose and serve individuals with autism and their families.