Research and Education for Autism in Children (REACH), CARD's research program, is dedicated to studying autism and identifying causes and treatments through research.
Parents who bring their children to the Center for Autism and Related Disorders (CARD) are often approached about participating in research during their visit. This might be a project from within our clinic or one coordinated by REACH.
The decision of whether or not to participate in research can be overwhelming, especially if you're uncertain about what questions to ask or what the terms and phrases related to research mean.
If you've never thought about joining a research project before, the information below will answer many of your questions and help you feel comfortable if you choose to participate in a research study.
Why is Research Important?
Research allows scientists to explore ideas about why things happen, how they are related to one another, or whether a particular treatment works. Research findings provide evidence that influence the programs and services offered in schools, clinics and communities.
The Basics of Research:
Why participate in research?
- It gives you an opportunity to share your experiences and make your voice heard.
- You can help researchers find answers to important questions that may benefit the autism spectrum disorders (ASD) community for the long term.
- You may receive valuable services or evaluations for free through a research study.
- You may learn more about your child’s development, his strengths and weaknesses, and the best treatments.
Joining a Research Study:
How much time does it take?
Every research study is different and each requires a different amount of time and energy. Some studies require only that you sign a consent form, while other studies will involve hours of testing. Some may follow your family for years, while others may take little to no time at all. It is important to know that research projects come in all shapes and sizes and don't always involve a big commitment on the part of a parent. Even if you only have a few minutes to spare, chances are there are still ways to participate.
What steps are involved in joining?
Not all research studies are the same, but there are a few general steps to joining almost all research studies:
- A research study is presented and you are asked whether or not you want to join.
- You will review a consent form with a research team member who can explain the study and answer your questions.
- You choose whether or not to sign the consent form. If you decide to join the study, the next steps depend on what is involved in the study and might involve filling out questionnaires or scheduling an appointment for a study visit.
- Remember, you can leave the study at any time for any reason.
Frequently Used Terms and Definitions:
- Consent: In order for researchers to use information from you or your child, you must first give consent or permission. This usually involves reviewing a consent form with a study team member and providing a signature or verbal agreement to join the study.
- Eligibility Criteria: Requirements that must be met in order to join the study.
- Exclusion Criteria: Items or traits that will prevent you from participating in the study.
- Institutional Review Board (IRB): This group reviews research studies and is responsible for protecting the rights and welfare of study participants. All studies must get approval by an IRB before you can even be asked to participate.
- Principal Investigator (PI): The PI is the person who oversees the study and is responsible for all aspects of the study.
- Research and Education for Autism in Children (REACH): REACH is the research program at CARD. The REACH team is dedicated to studying autism and identifying causes and treatments through research.
- Screening: Some studies require that their participants be screened before they can sign up, to be sure they meet certain requirements. This screening may include evaluations and questionnaires.
Before you agree to join a study, be sure to ask yourself these basic questions to decide whether or not to participate. Don't forget to add your own questions at the end of the list.
- What is the goal of this study?
- How much time will it take for me to participate in this study?
- What steps will be taken to protect my privacy and my child’s privacy?
- Are there any possible risks that come with participating in this study?
- Are there any possible benefits that come with participating in this study?
- How will this research help me to understand my child's condition?
- Who do I contact if I have questions?
Other Research Resources:
- IAN Project. Interactive Autism Network (IAN) is an online project designed to accelerate the pace of autism research by linking researchers and families.
- The National Institute of Child Health and Human Development
- Autism Speaks. Autism Speaks maintains a list of new research findings and studies.