ieParticipants

Learn how the DCC Studies work

The information below details what you can expect as you and your child participate in the DCC Infant & Child Studies.

If you choose to participate in this study, you will be asked about your experience rearing a child with DCC 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.

When you complete the infant study, you can continue participating in the DCC Child Study up to age 18.

remote 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

remote 18 Month Timepoint

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

remote 24 Month Timepoint

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

30 – 36 Month Timepoint

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

remote 6 Month Timepoint –

Infant Study Only

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

remote 12 Month Timepoint –

Infant Study Only

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

in person 24 – 36 Month Timepoint –

infant study only

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

Remote 4 – 17 year TimepointS –

child study only

• Online surveys about child
• Online surveys about caregiver