Participants

Learn how the ACC Study works

The information below details what you can expect as you and your child participate in the ACC Infant Study.

What to Expect

During the ACC Infant Study

If you choose to participate in this study, you will be asked about your experience rearing a child with ACC and your child’s behavior. You and your child will participate on up to five occasions when s/he is between 6 and 36 months of age. At each timepoint, you will complete questionnaires online (~2-3 hours) and will participate in phone-based interviews (~1-2 hours). You will be asked to submit copies of your child’s brain scans and radiology reports, and will be mailed a kit to contribute salivary samples for future extraction of salivary DNA.

Some families will be invited to the University of Minnesota for a developmental assessment (expenses paid). Your decision to participate in this phase of research will be made at a later date, and will not affect your participation in other phases of the research.

Participation Timeline

Here is a timeline of what to expect during the ACC Infant Study.

Enrollment Timepoint

  • Online form (consent, contact information, background form)
  • Submit MRI and/or diagnostic report
  • Brief call with researcher (10-15 minutes)
  • First research interview call
  • Saliva Kits by mail

6 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • First research interview call (if not already complete)

12 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

18 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

24 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

24 – 36 Month Timepoint

  • Direct behavioral assessment at the University of Minnesota (for select participants only)

30 – 36 Month Timepoint

  • Online surveys @ child
  • Online surveys @ caregiver
  • Interview Call

Enrollment Timepoint

  • Online form (consent, contact information)
  • Submit MRI and/or diagnostic report
  • Brief call with researcher (10-15 minutes)
  • First research interview call
  • Saliva Kits by mail

12 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

24 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

30 – 36 Month Timepoint

  • Online surveys about child
  • Online surveys about caregiver
  • Interview Call

Join the Many Other

Participants in the ACC Infant Study

There are a number of people across the globe currently participating in the ACC Infant Study. Join them today!