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.

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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 and Child Studies. Join them today!

Register now
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