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

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