Current Research Studies

Craniofacial Microsomia – Accelerating Research and Education (CARE) Study

Condition or Therapy:

Category:

What is the goal of this study?

Our CARE team is doing this research study to understand the healthcare needs of children, adolescents, and young adults with craniofacial microsomia.

Who can join the study?

This study might be a good fit for children and adults who:

• Have been diagnosed with craniofacial microsomia and are between 12 and 45 years old, or

• Are a parent or legal guardian to the child or adolescent between 3 and 17 years old.

What will happen if my child takes part in this study?

If you choose to take part in this study, you would be in the study for approximately 2 to 3 hours over the course of two phone calls. If needed, we are flexible and can add additional phone calls to accommodate your schedule.

Young adults ages 18 to 45:

We would like to ask you questions about your medical and surgical history.
We would like a few photos of your face.
We would like to interview you about how your diagnosis/condition has affected your life.

Adolescents ages 13 to 17:

We would like to ask your parent questions about your medical and surgical history.
We would like a few photos of your face.
We would like to interview you about how your diagnosis/condition has affected your life.

Caregivers:

We would like to ask you questions about your child’s medical and surgical history.
We would like a few photos of your child’s face.
We would like to interview you about how your child’s/adolescent’s diagnosis/condition has affected your life.
We would like to ask you a short demographic interview.