Participants

Learn how the DCC Studies work

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

If you choose to participate in these studies, you will be asked about your experience rearing a child with DCC and your child’s behavior.

For the DCC Infant & Child Study, you may be asked to participate on up to twenty occasions – when your child with ACC is 6, 12, 18 and 24 months of age, then annually up to age 18.
For the DCC Infant Study, you will be asked to participate on up to five timepoints – when your child with DCC is 6, 12, 18, 24 and 36 months of age.

At each timepoint, you will complete questionnaires online (~2-3 hours) and may be invited to participate in phone-based interviews (~1-2 hours). When you enroll, you will be asked to submit copies of your child’s brain scans and radiology reports, and may be mailed a kit to contribute salivary samples for future extraction of salivary DNA.

Some families enrolled in the DCC Infant Study 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.

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, 12, 18, 24 & 36 month timepoints

• Online surveys about child
• Online surveys about caregiver
• Interview calls (possible)

4 – 18 year Timepoints

(DCC infant & Child study)

• Online surveys about child
• Online surveys about caregiver
• Interview Call (possible)

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 (optional)

 30 – 48 Month in-person
(DCC Infant study)

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

18 years plus

DCC Adult Studies

• See the DCC Studies page on this website for information about DCC Adult Studies