Studies Enrolling Participants Ages 0–4

The BRAIN Study

Study description

This study obtains data from neuropsychological testing and brain imaging in boys at-risk for or with early-stage cerebral adrenoleukodystrophy (ALD) to uncover early, pre-clinical indicators of the disease. Data from these cohorts will be compared to data from typically developing boys to assess whether any neurocognitive changes precede or coincide with disease progression and development.  Visits include the participant completing some activities on an iPad while caregivers fill out questionnaires assessing the behavior of their child and any caregiver stress/coping experiences.

Recruitment parameters

  • Boys between the ages of 3 - 15  
  • EITHER have an ALD diagnosis OR are typically developing and healthy

Study contact information

To learn more about the study, email Rachel Floersch at [email protected].

Study keywords

ALD, typically developing, neuropsych testing, MRI, coping strategies

cCMV Research Study

Study description

Current knowledge about how cCMV infections impact brain development is limited, especially for children that have no major signs or symptoms at birth. From this study, we aim to provide families with a better understanding of how congenital cytomegalovirus (cCMV) may impact their infant’s long-term development and inform health care practices for these children. To do that, we are aiming to closely monitor the development of over 150 children who screened positive for CMV at birth.

When your child is around 12 months, 24 months and 36 months old, you will complete an in-person study visit (taking about 2-3 hours), phone interview (about 1 hour) and some questionnaires. These will measure your child's language, motor and cognitive development.

Around the time of your child’s 12-month developmental testing, your child would also complete an MRI brain scan during natural sleep (no sedation or radiation). We schedule 2 scans in case your child doesn’t fall asleep during the first one. If the first scan is successful, we will cancel the second scan.

Participants will receive up to $500 provided on a Clincard Prepaid Debit Card ($100 per visit or MRI scan). We provide parking validation onsite at MIDB, along with mileage reimbursement and lodging accommodations for families traveling from outside the Twin Cities metro area.

Recruitment parameters

  • Families who have an infant 12-months of age or younger AND was identified as CMV positive at birth via the Minnesota Newborn Screening program.

Study contact information

To learn more about the study, email [email protected], call/text 612-626-8233 or visit the study website.

Study keywords

CMV, congenital CMV, brain development, cognitive development, motor development


FORWARD-MARCH (Fragile X Online Registry with Accessible Research Database-Multiple Assessments for Research Characterization)

Study description

The FORWARD-MARCH project will collect survey data from parents and caregivers and conduct several tests with participants to understand their cognition (thinking), language, behavior, and autism characteristics. About two years after your clinic visit for FORWARD-MARCH, we will ask you to repeat the same questionnaires and tests and make a clinic visit. This is because information is expected to change somewhat over time. This will help us learn how individuals with FXS change over time and as they age. You will receive a summary of your testing results from the assessments and can use these as needed to complement or inform school evaluations, or for other social or disability programming.

Recruitment parameters

Only individuals with FXS born between 2003-2020 are eligible to participate in FORWARD-MARCH. This includes participants who were previously enrolled in the FORWARD study and those new to FORWARD.

Study contact information

To learn more about the study, visit the webpage, email Desirae Rambeck at [email protected] or call 612-624-0183.

Study keywords

Fragile X Syndrome

Precision Imaging on Plasticity (PIP)

Study description

This study aims to learn more about babies’ brains using MRI in young infants and the potential impacts of neonatal massage on brain activity.

Recruitment parameters

  • Infant: Healthy Baby born at ≥ 35 weeks gestation, without severe medical complications or implantable metal device, able to tolerate hearing protection during MRI.
  • Parent 1: 18 years or older and English speaking. Currently pregnant or recently gave birth. Without severe complications of current (or most recent) pregnancy or severe mental health issues or active substance abuse.
  • Parent 2: 18 years or older and English speaking without severe mental health issues or active substance abuse.

Study contact information

To learn more about the study, email Ginny Dang and Emily Drexler at [email protected] or call 612-625-6145.

Study keywords

Neonates, young infant, brain, massage, pregnant women