What to Expect at Your First Appointment at the Epigenetic Syndromes Clinic

Our team understands the challenges children with epigenetic syndromes can face. We’re here to help. Cincinnati Children’s Epigenetic Syndromes Clinic's patient-centered team works to prevent disease complications.

Making an Appointment at the Epigenetic Syndromes Clinic

Many patients come to the center through a referral from their pediatrician. We encourage individuals to receive a referral through a provider they or their child already sees.

Before Your Visit to the Epigenetic Syndromes Clinic

Our team will obtain records from previous care providers when available. Families are encouraged to reach out to our team to provide us with the institutions and providers involved with the medical care of themselves or their child. With that information, our team will request those providers send us the previous records. Other helpful information to bring includes:

• Genetic testing reports
• Past school reports from IEP
• Educational evaluations
• Any questions you have before your visit

On the Day of Your Visit to the Epigenetic Syndromes Clinic

Arriving at Your Appointment

The clinic is located on the 5th floor of the C Building at Cincinnati Children’s Burnet Campus.

Please plan to arrive at least 30 minutes early to find parking, walk to the center and register your child for their first appointment.

During Your Appointment

Our team will conduct a physical exam on your child’s first visit. We’ll also discuss in detail:

• Your child’s medical history, family history and development
• Complications and medical problems from your child’s syndrome
• What is affecting your child and family most
• Any questions your child or family may have

After Your Visit to the Epigenetic Syndromes Clinic

We’ll invite you and/or child to become involved in ongoing research during your first visit. Research improves how we understand and treat these syndromes.

Ways to participate include:

• Sharing your child’s medical history and other information in our clinic database
• Completing questionnaires and surveys
• Sharing de-identified leftover clinical samples or blood, saliva or skin donations. These are stored in our Discover Together Biobank for future studies

All these research aspects of our clinic are optional. Your child’s treatment won’t be affected if you choose not to participate. If you are interested in learning more about our research, please contact us.