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

Infant Brain Imaging Study (IBIS)

Study description

The goal of our study is to identify the symptoms of autism at an earlier age. You and your infant will travel to MIDB at 6-, 12-, and 24-months of age for developmental testing and an MRI during natural sleep. You may also participate in an optional LENA language recording at 6-, 12-, and 18-months of age. Your family will be reimbursed for all travel related expenses and compensated for participating. Your family will also complete online questionnaires at 9- and 18-months of age with compensation.

Recruitment parameters

  • Infants under 6 months old with at least one older, full sibling diagnosed with autism

Compensation

If you choose to participate in the optional LENA language recording, you will receive an additional $50 gift card. For the MRI visit, you will receive a $125 Target gift card, plus an additional $50 if a back-up scan is needed. You will also receive a $50 Target gift card for completing the questionnaires at each time point. Finally, compensation for the –36 month remote visit is a $100 Target gift card. We will also cover your parking during your in-person visits at MIDB. If you have to travel for your appointment, we will reimburse your mileage.

Study contact information

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

Study keywords

Autism, imaging, infant

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