Information for Participants

If you are interested in participating in a research study, please fill out our registration form below. We will contact you for any studies for which you are qualified.

We have a number of studies and each is designed to answer a different research question, therefore what is involved depends on the specific study. For most studies, you and your child would come to our family-friendly research lab where your child would complete various cognitive and behavioral assessments, get tutoring in math (if applicable), and undergo a few MRI brain scans at the scanning center nearby. In some cases, your child may get a mouth swab for saliva collection. The assessments include fun and mentally stimulating activities such as handling and manipulating blocks or other objects, and playing games on a laptop or tablet. The MRI brain scan is a safe and non-invasive procedure where your child lays down and plays games while the brain is being scanned (see Questions about MRI Scan for more information.) Be assured that you will be given detailed information of the study before we enroll your child in the study. All studies are completely voluntary and you can opt out at any time.

Your child may receive access to interventions (i.e. math tutoring) or devices that may not otherwise be available. You will receive study-related monitoring for the condition being studied. The interaction with researchers and being actively involved in a real research study provide fertile learning grounds for children, and get them excited about science and discovery. Many children have expressed great pride in their role as participants in our studies. Moreover, you are helping others by contributing to brain research and treatment advances. Children grow up quickly so we are always looking for participants!

You can volunteer for any study appropriate for your condition. In general, our current studies are looking for children with and without developmental conditions between 5 to 14 years old. Each study has specific requirements and criteria. The information you provide on the sign-up form along with a phone appointment with one of our staff will help us determine your qualifications before accepting you in a study. We also go through what's called Informed Consent with you before enrolling you in a study.

Anyone who participates in a research study will undergo the Informed Consent process. Its purpose is to help participants clearly understand what to expect, the rights of a participant, and the risks and benefits of participating. At our lab, visits may include scans, neuropsychological and behavioral assessments, and math tutoring sessions (if applicable). You are encouraged to ask questions about the study. If you decide to participate, you will be asked to sign a consent form. Signing the form does not mean you are signing a contract that binds you to the study, as you can withdraw from a study anytime.  Additionally, the informed consent remains active for the entirety of your participation, meaning that our researchers are required to inform you when changes occur, such as when new knowledge or risks are found, that may affect your decision to continue the study.

Our researchers run the studies according to strict rules set by the federal government, such as on how to conduct a study and how to protect human subjects. The Food and Drug Administration (FDA) and the National Institutes of Health (NIH) oversee much of the research in the US. In particular, the “Common Rule” was especially created to protect human subjects and is applied to all research funded by the federal government. The Common Rule says an institutional review board, or IRB, must be set in place to review and approve study protocols to make sure they are ethical, and to enforce rules to protect participants. Our researchers go through the Informed Consent process with you to explain the research being done and answer any questions you may have. We then obtain your permission, which is represented by your signature on the consent form, before you (your child) is formally enrolled in a study.

Most of our studies are paid by grants from the National Institutes of Health (NIH), National Science Foundation (NSF), other governmental entities or non-governmental like foundations. Funding may also come internally from Stanford University.

Any data that may be published in scientific journals will not reveal the identity of the subjects. The use of data acquired during the child’s participation in this project will be limited to research and educational purposes only.

a.       U.S. Department of Health and Human Services Office of Human Research Protections (OHRP) research participation resources (available in English and Spanish) 

                                                                i.     Informational Videos

                                                               ii.     Questions to Ask

                                                              iii.     Protecting Research Volunteers

b.     National Institutes of Health (NIH) Clinical Research Trials and You

c.      Center for Information and the Study of Clinical Research Participation (CISCRP)

                                                                i.     Important Information

                                                               ii.     Informational Videos (in English and Spanish)

                                                              iii.     Questions to Ask

                                                              iv.     African Americans and Clinical Research

                                                               v.     Los Hispanos y la Investigación Clinica

                                                              vi.     Participant Bill of Rights

                                                             vii.     Should My Child Participate?

MRI Scans

Our MRI scans take place at the Lucas Imaging Center, adjacent to the Stanford University Hospital. It is located at the corner of Pasteur Drive and Welch, at 1201 Welch Road, Stanford, CA 94305.

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We know families are busy and we try our best to accommodate your schedule as best we can. This includes setting up appointments after school, in the evenings, and on weekends. Appointments are coordinated with you by emails and/or phone calls. Weekends are preferred for MRI scan appointments, and weekday afternoons are preferred for tutoring.

We require that parents remain on the premises at all times while a child is in our care. Parents can wait in our designated waiting area throughout sessions involving neuropsychological or behavioral testing, as well as any tutoring. This is to ensure consistency across participants so that all testing is standardized. 

• Tutoring is scheduled at our lab in Palo Alto. In some instances, we may be able to make arrangements to meet at a library or another public space closer to you. This is determined by distance, staff availability and other factors on a case-by-case basis. The tutoring is once a week after school for four consecutive weeks.  Most sessions are one hour, but the first two sessions and the last session after the second scan may be about 90 minutes.  The child works one on one with a tutor and they do math tasks and play number games on a computer.  The tutoring is the same for all children: It is training on Fundamentals of Math (understanding quantity) which is designed to help children who have math disabilities. They will not be learning multiplication or division or any advanced math. Both children who struggle with math and who are very good at math usually enjoy the training.

Since our scans are for research purposes, unfortunately we are unable to offer any individual feedback on assessment results or your child's brain scan. However, you will receive a printed picture of your child's brain for educational purposes.

Yes. Research participants can always withdraw from a study at any time. Signing the Consent Form does not mean signing a contract that binds you to remain in the study. Contact the research assistant of the study in which you are enrolled to withdraw.

All data collected from our participants are stored in a highly secured Stanford server requiring multiple passwords. Because your privacy is of utmost importance, we de-identify all of the data, meaning all of the brain images are “cleaned” of anything that could help identify the participant. Participant’s data are then given an arbitrary subject number that cannot be traced back to the participant in any way. Only after these steps are done will researchers begin analyzing the results to see what they mean. The analysis can take months or years, depending on the complexity of the study and the research question we are trying to answer. Ultimately, publications of certain data and analysis may be found on PubMed and scientific journals. Go here to read our published studies.

• Contact the research assistant, study lead, lab manager or other lab members to let us know your concerns. You can also contact the Institutional Review Board (IRB) anonymously to report research misconduct at 1-866-680-2906

If the child has any history of head or eye injury involving metal fragments, implanted electrical device (such as a cardiac pacemaker), or severe heart disease (including susceptibility to arrhythmias), the child should not have an MR scan. If the child has had eye surgery to remove metal fragments from the globe (eyeball), then the child should not have an MRI scan.  Also, children with orthodontic braces, a palatal expander (butterfly) or with claustrophobia should not be scanned.

The child will be scanned in short intervals, with numerous breaks in between scans, in about an hour's time. He or she may solve math problems or respond to other tasks on a screen by pushing buttons,  and he or she may watch short videos in the scanner, so your child will be busy the entire time. We schedule a 3-hour appointment to allow enough time for you to fill out the consent forms and for your child to practice the scanner tasks on a laptop computer before entering the scanner suite.

Most children wear everyday clothing to the scan, such as sweatpants or jeans, and a t-shirt or long-sleeved shirt. The researchers will thoroughly look over your child for the presence of any metal before entering the magnet suite and decide if your child needs to change into the Lucas Center-provided pants and gowns. Please note that all loose metal must be removed before the scan. This includes glasses, jewelry, watches, hair clips, bobby pins, etc. If your child has had recent orthodontic work or piercings done, please give us a call. We may need to reschedule or cancel the appointment.

If anyone identifies anything unusual in the scan, they consult the Lucas Center for Imaging staff. If Lucas Center staff determines there is cause for concern, a research assistant will contact your child’s physician, who would then inform you of the abnormality. It is extremely rare that an abnormality is detected. Additionally, our scans are for research purposes and are at a lower resolution than is typically used for clinical scans, and are not designed for detecting abnormalities.

The most common side effects reported are dizziness, heat sensations, and claustrophobia. These side effects are uncommon and generally go away shortly after the scan.

Yes. The child is able to communicate with us throughout the entire scan. Your child holds a small squeeze-ball during the scan that can be squeezed at any time. If the ball is squeezed, we will stop the scan and check in with your child immediately. We strongly encourage you to watch the “Preparing for your MRI scan” video clip on our website with your child prior to the scan appointment. The video walks your child through the entire scan appointment, so your child will be familiar with the scanning procedure.  We also encourage you to have your child practice lying still for 5 minutes, and to listen to the MRI Sounds from the link on our website.

You can read more about MRI scans at the Radiology Info Organization website by clicking here (English/Espanol.) This website offers a comprehensive description of MRI scans. Please keep in mind that the Stanford Math Project does not use x-rays, radiation, injections, contrast material, or sedation of any kind.