Overview of ABCD Involvement
What is the ABCD Study?
The Adolescent Brain Cognitive Development (ABCD) Study is a groundbreaking research effort bringing together the skills of twenty-one distinguished academic/research institutions to establish a landmark study on brain and cognitive development. Twin participants are crucial for the success of this study and VCU’s MATR was chosen as one of only four sites that will invite twin families to take part.
The goal of this study is to increase understanding of how environmental, social, genetic, and other biological factors interact with each other to boost or undermine brain development and its associated outcomes well into adulthood. Data collected from the ABCD study will help address this crucial need to learn more about how all these factors influence brain development and twin participants will help provide the unique insight needed to unravel important gene-environment interactions influencing brain development.
What does participation involve?
This includes a set of pre-screening eligibility questions and questions verifying contact information, etc. If your twins look eligible based on these pre-screening questions, then the study staff will contact you, verify your twins’ eligibility, answer questions you may have, and schedule you for a study visit appointment. The study will provide mailed, online, and/ or emailed information for you to review. There will also be a chance for you and your twins to agree or decline to participate. Even if you agree in the beginning, the study is voluntary so you and/or each twin can withdraw from the study later if you change your minds.
Baseline Study Appointment Summary
Participation occurs at Virginia Commonwealth University (VCU), so at least one parent along with the twins will need to travel to VCU in Richmond, VA to complete the consent process and study tasks for the baseline study appointment. During this appointment, there are surveys for the parents to complete, but the bulk of the study is carried out by the twins. Questions for the parents include items about their twins’ behaviors, personalities, medical histories, mental health, birth and development. There may also be questions about the parent’s personality & habits. Since the researchers need to capture as much information as possible about all the factors in the twins’ lives that may be impacting their brain development, the twins will be asked questions pinpointing many different areas—this includes but is not limited to: personality & moods; peer groups & relationships; substances, such as cigarettes, alcohol, and other drugs they may have tried or that they have seen others try; pubertal assessments, mental health, and sleep habits.
The twins will also complete tasks checking their memory, attention, and thinking. These are a lot like playing a game, or solving puzzles or brainteasers. Some of these tasks will need to be completed in a Magnetic Resonance Imaging or MRI machine, which looks like a big tube and uses magnetic fields to produce 3-D pictures. This is crucial because the researchers need 3-D pictures of the brain to help see what areas are more active during different tasks. MRIs are non-invasive and safe ways of looking at the brain and how it functions. MRIs use magnetic fields and not radiation to produce the images. To make sure they are getting accurate brain pictures, the researchers need to confirm that participants are substance-free for the MRI so they will use samples, such as saliva to double check. Female twins may have some other tests and questions, related to being a female. The twins will also be asked to provide some samples, such as saliva or blood to help the researchers get DNA for the genetics portion of the study.
Altogether, this appointment, with its study tasks and built-in breaks, meals, and snack times, will take about 8 hours. Participants may choose whether they want to do all of this in one day or divide it between two days. Depending upon distance traveled, the study may provide hotel accommodations. Most of the tasks are voluntary, but there are some, such as the MRI, that are necessary for study participation.
Voluntary long-term participation
One of the things that makes this a landmark, groundbreaking research effort, is that the study hopes to follow as many of the participants as possible over a period of time, for up to ten years. Because of this, the research group will retain your contact information and data in their own NIH-consortium database. They will contact families that completed the baseline appointment to ask them to take part in additional surveys and study visits over the course of the full study time frame. Families and twins are compensated for these follow-up requests; amounts depend upon what tasks are completed. Although the researchers hope you will be able to be a part of the whole study, it is always your decision whether or not you want to continue in the study and you can withdraw at any time.
Will there be any compensation ($) for participating?
Families will be compensated for their time participating in the study. For completing the baseline appointment, parents/guardians that participate in the study day are compensated up to $200.00 total and twins are compensated up to $100.00 each. Furthermore, if the study notices something that could be clinically relevant to the twins’ mental or physical health, study staff will let the parent(s) know about it and provide suggestions for follow up with physicians.