The Benefits of Research
By: Nicole Russo-Ponsaran, Ph.D.
Assistant Professor
1. Why is it important to have a child participate in research studies?
Research studies help us understand how the brain, body, and behavior function together. Through research, we find new ways to help children. For example, research studies can lead to (1) better diagnostic assessments (2) preventative medicine, and (3) effective ways to help children. What we learn from research should guide your decisions about what to invest your time and money in for future therapies. With so many alternatives available today, you should look for practices that are evidence-based. When participating in research, an idea may first be theory-based, but in doing the study, eventual evidence will be available.
Additionally, it is important to consider that research projects need to have enough statistical “power” so that the findings are meaningful. Thus, research studies are requiring larger and larger samples sizes to show effects. If a study has low enrollment, the findings may not be able to be validated, published, and distributed and new diagnostic tools or promising interventions may not be available.
2. What are the benefits and risks of research participation?
The benefits and risks of research studies vary. However, any research study that involves human subjects requires Institutional Review Board approval which is, in essence, an ethics committee that protects humans’ rights. They ensure that no unnecessary risks are taken, that you are not being coerced into participation and that the study goals are consistent with the methods. They also ensure your identity is protected.
Benefits may include immediate benefits (some studies offer limited financial compensation or small tokens like snacks or small toys). In addition, sometimes you have access to cutting edge, theory-based interventions that are likely to be effective at no cost. In other circumstances, you will also receive a feedback report at the end of the study that helps you learn more about your child. However, other studies may offer no immediate benefit, but they will help advance our understanding and provide benefit in the future. Many children also enjoy participating in “science” and often visit a university or hospital, which they may find interesting in and of itself.
3. Will the parents get an opportunity to find out the results of the study and what it means to their child?
The type of feedback you receive may vary based on the study. It is important to keep in mind that many laboratories are only research laboratories though, so even if your child does or does not meet study eligibility criteria, a full clinical evaluation may be warranted. However, the research facilities will not be able to render a clinical diagnosis.
Sometimes testing scores can be shared; sometimes genetic information or brain images or responses are available to the parent. Often times a feedback session is offered with the Principal Investigator, where you meet to discuss the findings and have the opportunity to ask questions.
It is important to note though that some results may not be available to you as they are only meaningful in the context of group data, and often times, part of ongoing research studies. The larger data set and conclusions may not be available until the study is completed. Then, you are encouraged to follow up with the Principal Investigator for published abstracts or manuscripts to learn more about the overall findings from the study.
4. Does a child have to know he/she has ASD in order to participate?
Again, this will vary based on the study. Knowing if/when to tell your child that they have a diagnosis is a personal decision. Many studies have both control and diagnostic groups and the child may just be told that they are participating in a study to learn more about other children like him/her. Some studies do mention the diagnostic group in the title of the study which may appear on recruitment materials or consent/assent forms so it is a good idea discuss the study with your child before enrolling in it.