SARRC's research brings together many methods and scientists in an effort to gain a greater understanding of possible causes of autism, identify better treatments, and learn, as well as educate others, about how to improve the quality of life for those affected by ASD and their families. We believe that collaborating with other researchers helps us better answer some of the essential questions facing individuals, families, and the greater community. Here are some common questions about participating in SARRC research studies.
Why participate in research?
Research participants play an active role in advancing knowledge of treatment options, gain insight into their own experience, and help others by contributing to research that may improve the lives of others. Research participants contribute to valuable knowledge regarding the effectiveness of screening, diagnostic, and treatment methods.
What are the different kinds of research studies that SARRC conducts?
There are many different kinds of research studies at SARRC, and the portfolio of studies that SARRC conducts changes regularly. We are a participating site for trials that evaluate the effectiveness of investigational medications to treat various diagnoses (e.g. Autism Spectrum Disorder (ASD), Attention-deficit/hyperactivity disorder (ADHD), Fragile-X Syndrome (FXS), Angelman Syndrome (AS)). Other studies include device trials, which evaluate the effectiveness of various technologies in supporting research and treatment methods. Additionally, we engage in a variety of behavioral studies, which are often observational, and do not involve medical treatment. Lastly, SARRC actively engages in internal research, evaluating the effectiveness of our programs, and investigating new interventions that are informed by research.
Who can participate in research?
We recruit participants of all ages for different studies, and we aim to recruit diverse samples representative of the study population. Although most of our studies focus on individuals diagnosed with autism spectrum disorder, we periodically conduct studies that require the participation of typically developing children, adolescents, and adults, as well as studies focused on other genetic or developmental disorders. Each research study at SARRC has its own unique set of guidelines and requirements for participant eligibility. This inclusion and exclusion criteria for a study is in the interest of the participant, helping to ensure that a given study is applicable to their experience and safe for them to enroll in. Before you enroll in a research study, our team will go over these details with you and make sure a study is a good fit for you and/or your family.
What does my participation involve?
Before enrolling in a study, research participants review an informed consent form with a member of our team. This document provides you and/or your family with a comprehensive overview of the study’s involvement, so that you can make a well-informed decision about joining the study before giving your consent to participate. Study participation is entirely voluntary. Our studies vary in time commitment. Our team will also go over study length with you, including the amount of time an in-person visit will take, and what tasks you may be able to complete from home.
How is my safety protected?
Participant safety is SARRC’s top priority. In addition to reviewing inclusion and exclusion criteria (see: “Who Can Participate?), our staff monitors research participants’ well-being. For clinical trials specifically, we complete lab work and medical exams to ensure a patient is physically healthy, while also monitoring their emotional health. All information collected by SARRC is kept confidential and coded with an ID number to protect your family's identity. No family contact information will be shared with anyone outside of SARRC without your permission. To learn more about your rights as a research participant, you can speak with a member of our team or visit the Western Institutional Review Board (WIRB) web page for research participants.
Why are clinical trials important?
Clinical trials is a broad term used to describe a variety of studies, including observational, investigational medication, biomedical devices, and others. Participating in clinical trials drives the development of effective treatment methods for individuals with autism and other diagnoses. Specific research aims vary depending on the study, so ask one of our team members for more information about individual studies.
Will I receive compensation for participating?
Most of our studies offer some form of compensation, but the amount and type vary depending on the study. Ask our team members for more information about compensation for individual studies.
Will I benefit from participating in research?
Participation in a research study is not guaranteed to offer direct benefits (for example, improved health, functioning, or quality of life) to participants. However, a study may help inform future methods and advancements that could offer these benefits to the individual and others.
Is your question not answered here?
Contact our team at 602.218.8183 to learn more about exciting research opporuntities at SARRC.